

SCOTTY AND ME

a thirty-year survival memoir

Carol Blake

**SCOTTY AND ME: A Thirty-Year Memoir**

Written by CAROL BLAKE

Copyright 2013 by CAROL BLAKE

All rights reserved.

Cover Design by KIMBERLY BLAKE

Edited by ANNE JOHNSON

Smashwords Edition

The ultimate lesson all of us have to learn is unconditional love, which includes not only others but ourselves as well.

E.K.R.

To Elisabeth Kubler-Ross

for saving my life

With thanks to my family and many friends and acquaintances

for all their support.

My fourteen-year-old son Scott died on February 20, 1982. He took his last breath on February 7, 2012.

Up until that February day in 1982, I thought that when someone was badly injured or got very sick, they either got better or they died.

Never in my worst nightmares had I imagined that there was actually something worse than dying. I never knew that sometimes there was a resultant condition that could leave a person in an indefinite suspended state, not dead but certainly not alive in any real meaningful way.

Our story is one you don't hear often. It's the time frame that is the most unusual. Many people have asked how we've survived this long, and I tell them at first you count the hours, as in 1, 2, 3, and now it has been 262,000 hours, or in a more understandable unit of measure: thirty years. After surviving these thirty years, I'm still chasing contentment. I hope that compiling all the scribblings from various journals I've kept will help me come to a place of peace.

By writing and saving them, I am reminded just how far Scott and I came and how little we moved.

YEAR #1 1982

The worst day of my life was Saturday, February 20, 1982. I had just gotten back to my office late that afternoon with clients in tow after showing property all day. My message machine light was blinking; there was a message to call the hospital in the next town.

Oh, now what? I thought. I'd spent lots of time in emergency rooms over the years. Being married to an agricultural helicopter pilot who was also a professional motorcycle racer had caused me countless hours of worry, staring at white walls and glaring lights in various hospital rooms waiting for a doctor to appear and give me the diagnosis regarding whatever accident had befallen him that time. My son seemed to have inherited his father's penchant for daring and dangerous activities. Much time had been spent in several hospitals with him as well, waiting to hear when his various bones or sutures would heal. But I was totally unprepared for the magnitude and gravity of his injury this time. When I called the hospital, all my son's father would say was to hurry. It was bad.

I quickly explained to my clients that I needed to go and why. They could see how upset I was and wouldn't hear of me driving alone to the hospital. They put me in the backseat of their own car and at my urging drove the fifteen miles to the hospital at breakneck speed.

When I ran in the door of our small local hospital, Scott's father rushed to me with a look of sheer terror on his face. At that moment I realized that we were not facing a broken bone or stitches. "Carol," he said with a trembling voice, "Scott was hit in the back of the head with a helicopter rotor blade."

I froze in shock as he pointed to a small examining room filled with doctors and nurses hovering over a seemingly lifeless shape on a gurney. As the reality hit me, my head started spinning.

It is every parent's worst fear. The loss of a child is something so abhorrent and unnatural that the mere thought is too much to bear. I was reeling with this news when a doctor came out and escorted us to a small private room. We were told that Scott probably wouldn't live, and if he did, at the very least he would be blind. "His skull is badly damaged in the back brain stem region. That is the area of his brain that controls the processing of eyesight. He has lost a lot of blood, and an injury of this magnitude is something that we can't handle," the doctor explained.

They had sent for the Life Flight helicopter to transport Scott to the big university hospital forty miles south in San Diego. I was asked to sign on the dotted line of the first of the many forms to come. It was Scott's second Life Flight trip of the day.

The accident had happened on our family ranch about twenty miles away. Our 25-acre avocado grove clung to the top of a fairly steep hilltop that offered a 360-degree, knock your socks off, all the way to the ocean view. Level ground was at a premium.

Scott's father kept one of his work helicopters on the hilltop. To accommodate landing it, he had constructed a substantial deck/helipad that cantilevered over one of the steep slopes. Scott had been working on his motorcycle in the nearby shop when he heard his father landing. Scott scrambled down the hill to tell his father he needed help with something right away. "Alright," his father told him, "I'll be there as soon as the ship shuts down." Scott scrambled back up the slope and stood up too soon. The still-spinning rotor blade hit him in the back of his head. His father was flooded with horror as he ran to his son's prone body and saw massive amounts of blood gushing from his head. Frantically he scooped Scott up in his arms and ran to the phone to call 911. He put Scott's limp body in the back of the truck and started driving to the hospital as fast as he could. Halfway there, he saw the Life Flight helicopter land. He pulled off the road and our hemorrhaging son was transferred to the helicopter and flown away.

We followed the second flight by car, pleading as loud and as hard as we could to whomever to please let Scott live. By the time we arrived at the hospital, he had been rushed to surgery. We were given more papers to sign and told to prepare for the worst.

It was a ten-hour operation, during which he was transfused with forty-four units of blood. Friends came to be with us. I could barely breathe during those long hours, in between my begging please please please, don't let him die.

When the surgeon came out at last, we held our breaths awaiting the news. "He's alive and stable but cannot I give you any prognosis. You can see him when he's settled." We were elated to know he had survived. After a few more hours, we were allowed to see him in intensive care for five minutes. He was almost unrecognizable. His beautiful curls had been replaced with a full head bandage. Tubes for drainage and cords for monitoring came out of his head and body. His mouth and nose were connected to a breathing machine and there were IV tubes in both arms. His eyes were closed. He was unconscious. I carefully leaned in to tell him how much he was loved and that it was going to be all right. His father and I were told to go home and sleep. Scott wouldn't be waking up anytime soon. Before we left, the doctors told us that if he survived, which was doubtful, he would have severe brain damage. I didn't know what that meant. The hour-long drive home was surreal.

We returned the next morning to find his condition unchanged. Visits were five minutes per hour and only one visitor was allowed at a time. Each time I saw him still breathing, I was relieved. Where's there's life, there's hope, I told myself.

The second day post trauma, Scott's inner cranial pressure went off the charts, and so he was wheeled once again into surgery to relieve that dangerous condition. He survived, and again we rejoiced.

Three weeks went by as we sat in the very small and windowless intensive care waiting room on the eleventh floor of the UC San Diego Medical Center.

Friends, sisters, and grandparents came and went, but we just stayed and waited. Every five-minute visit, I hoped to see him smile when I walked into the room and he heard my voice. But he remained unresponsive. Intensive care nurses have the unenviable task of trying to give families a glimmer of hope by reporting the smallest bit of positive news. One sweet nurse conveyed her support by telling us that she heard bowel sounds with her stethoscope. We hung our hats on that for a while until more monitoring revealed a blood clot had formed in his brain. He would need another operation. We counted five more hours and he survived. We exhaled. We waited.

While waiting in that dark and claustrophobic room, I began to regularly have a feeling I had experienced a few times before. It was a very scary sensation the first time it happened.

A couple of years before Scott's accident, I was driving from our home in Southern California to Sedona, Arizona, to visit good friends. I made this trip fairly often and was used to arriving exhausted after a ten-plus hour drive. This time it was after midnight when I pulled into their driveway. We had our hellos and hugs and then I retreated to the guest house and prepared to crash out.

But it wasn't sleep that came. It was an eerie feeling of floating up to the ceiling and being stuck there, watching myself reclining on the bed. I felt completely detached from my body and just watched it in a very frightening observing kind of way. What was going on? Had I completely lost my mind? It felt like a separation: while I saw myself, I couldn't quite BE my whole self. Trying to shake the feeling off proved useless. I started to feel very anxious about this lack of control and thought of going into the house to wake my friends and crawl in bed with them hoping it would go away. But...how silly was that? And so I didn't leave, but remained in this detached state until almost dawn when I was finally was able to fall asleep. Upon waking, I was very relieved to feel whole and normal again. I never mentioned this experience to anyone.

A year or so later it happened again, but only for a very brief time. I was in my car coming home from work and all of a sudden I left my body again, floated above and saw myself driving along as usual. It's happening again, I realized, and yet this time it wasn't as frightening as the first time, and as soon as I had that notion, BAM...I was back in my body, driving along normally. That was weird, I thought.

The weeks of waiting evoked the same experience repeatedly. One minute, I would be watching the clock from my seat in that tiny room, and then I would be watching myself from above, still watching the clock. The difference was that the first two times it had happened, I was scared. While keeping that awful vigil, it was welcome. It was a relief. It allowed me to be there, which had become truly unbearable, and yet not be.

After three weeks in intensive care there had been no great awakening. He had been stabilized enough to be moved to a different room on the ninth floor, the sub-acute floor. He still required high level care, but he had been weaned off the ventilator and most of his tubes had been removed, with the exception of a nasal feeding tube and a semi-permanent IV port in one of his arms.

And then, thirty-two days after his accident, when I got to the hospital his eyes were open. We were so excited. We all tried to get him to make some kind of contact with us. Nothing. We thought that maybe we all just needed to try harder to break through his unresponsiveness. The hospital was as supportive as they could be. They gave us a booklet on head injuries which basically said if the patient didn't die he might get better but he might not. I kept looking for support groups for further information on what to do next but those resources simply weren't there.

The few articles I dug up that were published on traumatic brain injury (TBI) offered suggestions for trying to re-acquaint the patients with their lives before their traumas. It felt right that if we could just flood his brain with familiar things, then maybe, just maybe, something would get triggered and he would snap out of it. After all, it worked in the movies, didn't it? That's pretty much what we had to go on. Part of the problem with the lack of information is that up until very recently patients with catastrophic open brain injuries such as Scott's simply didn't survive. Technology had progressed to extend the quantity of life, but the quality of that life couldn't be known or predicted. So...we were pretty much inventing the wheel.

A friend lent me a hand-held tape recorder. "Please," I asked all our friends and relatives, "make recording of your voices. Tell stories or silly jokes, play music, do something. Together we can make him better." I told myself and the others, "Somehow, through the sheer force of all our wills, Scott will recover." On my taping project I even went so far as to get the sound of our faithful dog's familiar barks. Over and over and over, I played these tapes while I did "range of motion" exercises with his limbs, movements I had been shown how to perform by the rehabilitation staff.

Day after day I visited him, walking up the nine floors, hoping for the faintest sign of recognition, a smile, a squeeze of my hand, an eyelid flutter of his comprehension and response to our efforts. But there was nothing. I was so discouraged.

When I walked into Scott's room one morning at the end of March, I was shocked to see his condition. During the night he'd spiked a fever of 106 degrees. The doctors told me, "we tested and have concluded he has encephalitis that was possibly caused by the initial injury." They speculated that the blade that had penetrated his brain tissue may have been dirty or contaminated. They immediately put him on mega doses of antibiotics and laid him almost naked on an iced pad to artificially bring down his temperature. This was a huge setback. I felt like I couldn't deal with one more thing. I spent the rest of the day massaging his feet and sobbing.

In a couple of days, his fever broke. With relief, we re-grouped. But he wasn't getting better. There was no response. We were despondent, but still committed to keep up the program of tapes, body work, and support. Then the doctors wanted to do another procedure. "For Scott's comfort," they informed us, "he needs to have a feeding tube implanted that goes straight into his stomach." They went on to explain, "Because of the uncertainty of a long-term prognosis, creating a port to directly deliver his meds and liquid food would be both easier and less irritating for him." He had to be well nourished in order to recover. We reasoned that anything would be better than having a tube down his nose, and so for his comfort we agreed.

Even after Scott had the surgery to insert a feeding tube through a hole directly into his stomach, I sometimes noticed him kind of smacking or licking his lips as if he was hungry. The hospital was huge. It was a teaching hospital connected with the University of San Diego and was eleven stories tall with many office and classroom outbuildings. To feed the appetites of patients and staff, as well as a student population of considerable size, it had an enormous and quite wonderful cafeteria. My previous conceptions of hospital food were thrown out the window here. This eating facility was almost stadium sized with nearly unlimited choices for every culture. The food was good, healthy, and cheap. That it was cheap was lucky, because I hadn't worked in two months by then. I was on straight commission, so when I didn't work I didn't get paid. My daily routine had become to drag myself out of bed, primp as best I could, and get on the road for the one-plus hour drive to the hospital. I would be hungry by then, and I would head for the lower level that housed the food. Every morning I filled my tray with eggs or cereal and beverages and rode the elevator to the ninth floor and ate with Scott. One day, I decided to try giving him a taste of my oatmeal. First I looked around to make sure no one was watching, and then I put a dab on my spoon and lifted it very slowly to his lips. "It's oatmeal," I told him, "take a real big breath and smell it." His lips and tongue moved when I gently put the spoon to his lips. He opened his mouth and I let the tidbit slide off into it. He looked a bit surprised and swallowed. "He actually ate it," I enthusiastically told his father. "I just know this is a huge step in his recovery."

A series of small complications kept Scott in the semi-acute room. His father and I settled into a routine: I came in the morning, and he came in the afternoon after work. I had been feeding Scott a little breakfast daily now, but he was not recovering. The doctors didn't feel that his eating of mushy foods was anything more than a reflex. He wasn't consciously controlling the action. His father and I pinned our hopes on getting him extensive treatments in a brain injury rehabilitation facility. Every day, we continued communicating with him as if he were totally conscious, because we just didn't know. It was hard to spend large periods of time with a person that was non-responsive. I found that the best way to keep him stimulated and pass the time while there was to read aloud. I hoped he enjoyed it. I know it made keeping him company a bit easier for me.

We held our breaths when a neurologist who specialized in brain rehabilitation came to make her evaluation. The doctor was eager, young, and beautiful. She took pity on us and agreed to accept Scott into their very intensive program for ninety days. "If there is not significant progress by the end of that time period," she told us, "then other plans will have to be made." I didn't want to think about that. This just had to work. I was so exhausted I was numb. Since Scott was stable, my thoughts turned to taking a long weekend at my father's house in Arizona. Ah, warm sun sounded so good. Moving Scott out of the big hospital to a rehabilitation facility was something that seemed wonderful but overwhelming. I felt that the energy I needed could be gathered up with an escape for a few days.

Arizona was a wonderful respite. It was always so beautiful there in the late spring, with the dry washes full of wildflowers and the creek cheerfully bubbling along. It was a good visit with my father even though he never once mentioned Scott's name. I had come to find out that for so many people, it was just too painful to bring the subject up. It felt very isolating not to have anyone to share just how horrible it had been. I was missing my mother more than ever. She'd been gone then for thirteen years. It was excruciatingly lonely being on my own and making almost all of the decisions by myself. And then there was the unrelenting heartache. My friends called less and less, and I sensed that my boyfriend of two years felt like this was way more than he signed up for. We were certainly not having much fun together in those days.

My journal, however, was a bottomless well that encouraged and accepted the load of all of my grief and confusion, and for that I was grateful. I became more and more dependent on that outlet.

On June 1, we moved Scott to the place that I fantasied would be the facility I could pin all of my hopes for a miracle on. After a week at this state-of-the-art upscale specialty hospital, I at least found some comfort in not having to worry how to pay for it. As stressful as it was for us, at least we weren't burdened with the medical expenses that were proving to be monumental. Scott was well insured, and that was an immeasurable relief...and a surprise, actually.

How he came to have this coverage is a story that is more than strange. The night before Scott had his accident, a Friday, he was coming home late from the movies with my boyfriend and me. Scott told me he needed to get up early in the morning to go bowling with his 4-H group, and then he had to work on his motorcycle because he was going riding in the desert with his father and friends on Sunday.

"What?!" I asked, tapping gently on the cast he'd been wearing on his arm for the last six weeks. His arm was still healing from a previous tumble on his bike. "I don't think so," I informed him.

"It's OK," he told me, "the cast is coming off on Tuesday anyway, so I'm just going to saw it off a couple of days early."

I was afraid that he would fall again and be re-injured. I expressed my concerns to him. He replied: "Don't worry! If that happens, it won't cost you any money because Dad's helicopter company just got health insurance, and so I am covered under that policy, too." That, of course, wasn't my main concern, but I asked him if he was sure about it.

His father had never believed in insurance of any kind. We used to argue about his not even wanting to get car insurance. He thought it was a big waste of money, and he wouldn't even entertain the notion of obtaining life insurance despite the fact that he was in one of the most dangerous professions one could have. If he did purchase it, he thought it would put a jinx on him, an "if you didn't have it you wouldn't need it" line of thinking. That outlook never brought me peace of mind as a young uneducated wife and mother of two, nor did his idea of a solution for our immediate poverty in case of his demise. "Just get married again right away," he advised. When Scott told me that he had other insurance with his father, I made a mental note to check it out. If it was true, I would drop Scott from my own policy and save a bit of money. But I didn't have time to ask, because the very next day Scott was gone. I've often thought what a strange, curious conversation to have had the night before that fateful day.

So at that moment in time, two insurance companies had stepped up to the plate and covered almost everything, which when I last checked was in the $700,000 range. Of course that didn't help me pay my own bills that came in whether I was working or not, and at that time it was mainly not. Self-employment had its drawbacks, but at least with no medical expense woes I was falling into debt at a much slower pace.

As of July, we still weren't seeing any real progress. Scott shared a room at the rehabilitation hospital with a 22-year-old man who had suffered a head injury in a car accident. Car accidents are one of the most common causes of severe brain damage. I watched as Scott's roommate's condition improved and he made modest gains. He could talk with his hands so he and his mother could communicate, making it possible for her to better attend to his needs. I was very envious. Happy for them; sad for us. The rehabilitation schedule was demanding. The staff got Scott up several times a day for various treatments and therapies. Our routine became to visit late in the afternoons.

As any mother would do, I kept searching everywhere for information on any possibilities for healing, even weird alternative therapies. I read everything sent to me by well wishers and made note of anything I saw in the newspapers or heard on the television or radio about brain damage. A lovely naturopathic friend and neighbor of ours had a "shaman-like" acquaintance that she sent to Scott's bedside very late one evening to do his "woo woo" energy work with him. The shaman was quite the image in his flowing robes and long hair. He certainly startled the nursing staff, but they just left him to his chanting and the laying on of healing hands. I didn't really expect anything from this experience, but I felt it couldn't hurt, either. And then there were the juice treatments.

My family was always ahead of the curve when it came to being health conscious. When an acquaintance suggested giving Scott a daily elixir of fresh organic juices, it made sense to me. Celery was touted to be of special benefit to nerves, and when mixed with carrot, beet, and apple, it was tasty, too. I bought an industrial strength juicer and start getting up a wee bit earlier in the mornings to make the concoction that couldn't hurt and also just might help. Because Scott couldn't take liquids by mouth, I had to plot how to get the juice down his stomach tube. I was embarrassed to ask the staff whether they thought it would help to give him some. In my infinite wisdom, I decided not to tell anybody and just give it to him when no one was around. Of course I got caught pretty much straight away because it wasn't as easy as I thought to get the colorful liquid into the narrow opening. It felt like a "Lucy" moment as I tried to plunge the juice down the narrow rubber tube. It immediately overflowed, staining his gown and bedding. When the nurses saw red, beet red, all over the place and frantically looked for the source of his bleeding, I had to sheepishly confess. I subsequently got permission to continue, but with the trained staff doing all the plunging from then on. After a few more weeks, it became apparent that the juice efforts were not paying off, and neither were the physical efforts being made by the rehabilitation crew. Everyone was getting very discouraged. They started dropping hints about the possibility of Scott not recovering, and about us making permanent plans for his care. This was a thought I was not prepared to deal with ever, much less soon.

As time marched on, I was asked to come to the administrator's office. It was August 15, six months post trauma. "It is with a heavy heart that I have to tell you that we don't think Scott is benefiting from his treatments here. At the end of another thirty days, if there's no noticeable improvement, you will have to make arrangements for a long-term care situation," they sadly told me. We would be on our own. Actually, Scott and I would be alone. Scott's father had pretty much given up and wasn't visiting very often at that point.

After hearing that dreadful news, I called Scott's father and asked him to meet me for lunch. I sobbed almost uncontrollably as I spurted out the details of my meeting. "Carol, I think we should start looking for a nearby nursing home to place him in," he commented after hearing the news. The mere mention of relegating my precious fifteen-year-old son to a corner in some institution brought on so much more anguish and weeping that other diners were staring at us.

I had to leave the restaurant. "Nursing homes are not an option," I sputtered to him as we continued our conversation in the parking lot. "I can't think about doing something like that. I just can't. There must be another answer."

It seemed the only other option was to bring him home with the hope that maybe if he was in his own environment, immersed in his former familiar world for a while, he would start to heal. I felt like we couldn't give up now. He needed a chance to mend. He was so strong. Why would he have made it this far not to go all the way?

Phone calls to the insurance companies yielded a favorable commitment from them to provide the resources to hire help. I knew I couldn't handle taking care of him 24 hours a day all alone. I wasn't sure that even with help I would be able to deal with caring for him at home, but I had to try. At least he wouldn't be institutionalized, I told myself. Somehow I would suck it up and make it work. I had to.

By September 15, it had been seven months since Scott's catastrophe, and I was finally bringing him home. A friend had a van and offered to help. The nursing service that had been hired sent one of the new nurse recruits to accompany us on our sad trip. My large living room looked small by the time we had moved in a hospital bed, a wheelchair, a Hoyer lift, and the other assorted equipment. I was really nervous and scared. I'd always been a private person who treasured her quiet time. I already had great concerns for my sanity and I didn't know what to expect. To have my baby come home this way was far from the dreams that I had had. If courage came in a box, I would need one the size of Texas.

By mid-October, I was so depressed that I was barely functioning. Scott still was not responding. The reality had finally set in, and it was so painful that I just wanted to get in the car and keep driving. The days became a blur of taking care of him and just hanging on. Because there was no way to bathe him, he was reduced to sponge baths. Washing his hair was a two-person job. The soft spot in the back of his skull where the bone was missing was huge, indented and sensitive, and even though his hair was growing back in, we constantly had to be aware of his poor fragile head. Twice a day, the nurse and I got him up in his wheelchair so I could take him outside for fresh air and a change of pace.

Another portion of my days was spent cooking and arranging menus, all mushy ones of course. Scott was able to take most of his nourishment by mouth but liquids and meds were plunged down his tummy tube. Before his accident, I had gotten a bit spoiled. Ever since I was seventeen, I had had husbands and children to care for, and I had been the sole cook and bottle washer. At the age of fourteen, Scott was old enough to prepare his own meals now and then. Occasionally, I was even surprised with a meal he had prepared for me when I dragged in late from a long workday.

One day blended into the next without much distinction. My days were filled almost completely with just surviving. My real estate career went on in a much-abbreviated way and my paychecks shrank accordingly. My boyfriend was still hanging in there and we tried to carve out some time on weekends to be alone, but it was hard for me to get any real happy energy going when I was so drained all the time.

In November, my thoughts turned to the holidays. It seemed like my entertaining extravaganzas were long gone, and I was frankly too tired to think about it or care. Christmas loomed. How was I going to celebrate without Scott? "We'll help get you through it," my boyfriend and other friends vowed. The last happy holiday felt like a distant dream.

I missed Scott so much that when I went to the grocery store one day, I found myself standing in the soup aisle staring at the can labeled Bean with Bacon. It was his favorite, and the tears came so hard and so unexpectedly that I had to flee the store for fear of making a scene.

My pals did pull me through the holidays, and got me into the new year in one piece, for which I was very, very grateful.

YEAR #2 1983

When January arrived, I realized I had to face the prospect of Scott not recovering any time soon. If we were in this for the long haul, some changes would have to be made. Having Scott and his caregivers reside in the living room, which adjoined my bedroom, with no insulation, was not going to work long term. As it was, every moan, groan, and procedure could be heard through the wall, and I didn't know how much more of that I could endure. Sleep was my refuge. I needed it in the worst way, and I wasn't getting it.

I heard that Scott's father had a new girlfriend, which explained why he was pretty much missing in action since I'd brought Scott home. We had spoken at Christmas about the need to think longer term and about my inability to function with Scott's room connected to mine.

Once again, Scott's father had wanted to pursue the nursing home solution.

I told him my idea: turn my attached garage into a separate living space for Scott and all his needs. The garage was right off of the kitchen and would be convenient for cooking. We could build a bathroom and storage area for all his meds and supplies, and mercifully there could be a separate entrance for the nurses to enter and exit when they came to us in eight-hour shifts.

I begged Scott's father help me pay for it. "You're drawing a salary," I pleaded. "I just can't give up on him not getting better. I've never asked you for any child support in all these years. Please help us now."

It was a deliberate effort designed to make him feel guilty enough to step up to the plate and do the right thing. I only managed to convince him to think about it. He informed me that he and his buddies had already planned to be gone for the next three weeks on a sailing trip. We could talk more upon his return.

I didn't want to wait that long to get started. In my mind, I started creating that special spot for Scott and his caregivers.

The four-hundred square foot space that was once my two-car attached garage would have to serve many purposes, all of them functional, and yet it should be cozy. I reasoned that it wouldn't be a huge expense to finish this space for his comfort because the main structure was already there. I found that the more I visualized this space, the deeper I was breathing, affording me more comfort than I had experienced in almost a year. I thought that after we got him in his own special spot, then we could really concentrate on more long-term therapies for his healing and recovery.

As we proceeded with the plans to convert the garage, I was keenly aware that this building project didn't have the fun of previous projects. Every element and decision was based on sorrow, from the special design for his whirlpool tub to the storage areas for the enormous amounts of supplies that were needed. I was trying so hard to stay positive, but I felt like I was slowly slipping into a deep dark hole that was sucking the very life force out of me. Just talking on the phone to all the various entities needed to pull the whole project off was almost too depressing for words.

On January 15, I was unable to get out of bed. It was the second day I had just lain there drifting in and out of my body and wishing I knew how to stay out forever. The phone rang often. I couldn't answer it. I heard the messages as they were broadcast through my machine. I was unable to move or respond. "Where are you?" the voices asked. "Please answer the phone." I couldn't. Friends came to the house to check on me, but I hid my head under the covers and couldn't speak. Oh my God, what would happen to us? I heard Scott crying and moaning through the thin wall and felt that I could not bear it anymore.

January 17 was my daughter's twentieth birthday, but a celebration was a concept I couldn't imagine. I languished in my bed ensconced in a fog of grief. Any future seemed dismal. Of the two viable options that I felt I faced, suicide or flight, I really wanted to take flight. I did think long and hard about suicide, even wrote a note, but how to do it? And how could I abandon my daughter. My poor lost little girl. I saw very little of her during these times. She had always insisted on doing things her own way. And although her way was a far cry from mine, I tried to accept hers. We all have different survival tools, I told myself. My idea was to just run away and start over. I'd read books where people did that. I wondered how. How much did it take to tip one over? It must be different for everyone. I also wondered if I could survive the guilt. Through a stress-induced haze, I drifted in and out of sleep, the only escape available to me. I vaguely heard the front door open and close and the whispering voices that signaled the changes of nursing shifts. I really didn't care if I never got up. It felt like a huge relief to lie there in an almost catatonic state, feeling like the rest of the world could just go to hell. In quiet voices, the nurses expressed their concerns and worry for me, but I just didn't care.

After five days I was still in bed, listening to my answering machine broadcast the voices of my boyfriend and others, letting me know that they understood I wanted to be alone but they were very worried. Business associates left pleas for calls back. I was paralyzed and was still having sobbing fits that I just couldn't control. I felt myself slipping away, further and further into complete and utter helplessness. If there is such a thing as rock bottom, I was there. All I could think of was getting relief from my pain. It finally occurred to me that I couldn't continue to go on so utterly alone. I needed help, but from where and from whom? For the most part, my friends and even my boyfriend were unable to deal with the horrible state I found myself in, and Scott's father seemed to have disconnected himself from us both. Maybe it was an effort made for his own self preservation. I could only guess.

So I just continued to let myself drift in and out of my body, even though I knew that trying to escape in this manner was not a solution. It was a coping mechanism to be sure, but not something useful in the long run. How was I ever going to function in any kind of normal way again? Was I doomed to be forever immobilized by this debilitating despair? Slowly my brain started scanning for other options. It must have been at least three years before then that I had read in the newspaper of a lecture to be given at a nearby high school by a woman named Dr. Elisabeth Kubler-Ross. She was a world-renowned physician, much lauded for her work with dying patients, and the author of the ground-breaking book On Death and Dying. She also believed in reincarnation. This was a subject that fascinated me. It seemed to explain the unfairness of life, a subject that had always inexplicably occupied my mind. This was a concept I wanted to hear more about. I convinced my then fifteen-year-old daughter and her friend who was spending the night to hear what a real authority had to say on the matter. It was a greatly disappointing lecture. Instead of a discussion on the prospect of an afterlife, Dr. Kubler-Ross chose to share her stories of how parents dealt with the loss of a child. It was a very depressing evening and a subject that certainly did not resonate with me. My children were strong and healthy. I was thirty-three years old and was working my butt off to support us. A lecture on the death of a child was not a comforting one to me because it was not my reality. It came to me these years later as I was lying inert and unable to function, that it was most curious how Dr. Kubler-Ross had changed her lecture subject for that evening. Through the fog of my grief it came to me that I needed to speak with her.

That goal got me out of bed and to the phone book. Almost unbelievably Dr. Ross had her base of operations in a town not fifteen miles from my own. I summoned all my energy, but even after I dialed and the phone was ringing I was unsure of what to say. When I heard a voice answer on the other end, an abbreviated version of my story poured out of me between sobs, gasps, and the very recognizable voice of utter defeat. The kind and knowing receptionist asked for my number and made me promise to stay by my phone. "It will ring in ten minutes or less," she promised. And it did.

"This is Elisabeth," the business-like voice announced. "Where do you live?" Amazingly, we lived in the same little country farming town. "Please come to my house tonight," she implored, "I'll give you directions." She did, and we said goodbye and hung up.

It was all happening so fast. I had to get up. I had to take a shower. I had to get dressed. I had to eat. I had to talk to the nurses. I had to get in the car and drive. And so I did.

Elisabeth answered the door of her cozy, charming, and somewhat cluttered cottage, which was tucked into a grove of eucalyptus trees on a hillside overlooking our small valley of scattered lights. She offered me tea. We sat together on her couch and she asked me to tell her about my son.

After I had related the gory details, she asked me all the questions I was afraid to ask myself. "How are you handling your anger about this event?" she inquired.

"Anger? I hadn't thought about it," I answered. As I sobbed, she offered me tissues and urged me to go on and on until, a couple hours later, I was completely spent. "What now, Elisabeth?" I asked her. "I'm scared and alone. What will happen to us?"

Elisabeth imparted some words of wisdom I would never forget. She told me, "When life throws you in the blender, you can come out chipped or polished. The choice is yours." She held my hand and said, "Please think about your choices, Carol, however limited." She believed I still had some. I had thought there were none left.

Elisabeth was an extremely busy woman in those days. She was traveling upwards of 250,000 miles a year giving lectures on her pioneering work on dying to the medical community. Her books on dying brought her many invitations for readings and signings. She logged many miles putting on workshops and personally visiting as many dying people as she could all over the world.

She was a five-foot-tall bundle of energy and ideas who seemed not only to exist but to thrive on little sleep and lots of black coffee and cigarettes. She was always available and perpetually pushing the envelope. The night that I was fortunate enough to spend with her changed and saved my life; of that, I have no doubt. She urged me to do some serious healing work at a five-day grief workshop she would be holding in Northern California a month later, and offered me a partial scholarship to attend. I promised her I would. As I drove home that pivotal night, for the first time in a year I was thinking that I might survive.

By the end of January, it felt like I was somewhat better. Connecting with Elisabeth was like experiencing a re-emergence of my soul and spirit. It felt like some of my powers were returning. Breaths were coming longer and deeper, enabling me to stay standing.

Creating a special room for Scott out of the attached garage became a mission.

For the last six months, the little dream house I had built for the kids and me had become a hospital ward. Nurses came and went at all hours of the day and night. Supplies were ordered in unbelievable quantities, along with prescriptions and medications that were delivered by UPS with such frequency that the driver and I were on a first-name basis. Among the very few blessings I could count was that the two insurance companies were coordinating and so far were covering everything. The costs were staggering. Twenty-four-hour home nursing staff rates were upwards from $20,000 per month. I wondered how much longer this could go on. I was suspicious of insurance companies. They didn't like it when the odds weren't in their favor. We were a definite drain on their bottom line.

As promised, I made arrangements to attend the five-day workshop that Elisabeth was facilitating in Northern California. Ah, a road trip, a brief respite, and with it the hope of some healing and acceptance. When I returned, Scott's new quarters would be ready, with the exception of painting, floor coverings, and a few other minor details. It was my goal to have it ready for him for his sixteenth birthday.

Elisabeth's workshop was transformational.

The drive was beautiful. At that time of year, California is greener and lusher the farther north you go. My destination after a six-hour drive was a large, tranquil-looking estate sprawled over a gently rising hill in the otherwise flattish farming countryside. I already felt more peaceful as a result of my breathing, which was becoming more frequent and deep as I got closer to my appointed destination.

A twisting road brought me to an operating monastery run by monks with good business sense.

Inside a walled-off area on the main grounds were a separate set of buildings that were rented out for large gatherings and workshops such as the one I attended. The large dining hall seated at least 200 people and the kitchen facilities reflected that capacity. What especially enchanted me about this venue were the gardens. Trails, built by and for the benefit of the resident monks, but open to everyone's enjoyment, meandered all over the hillsides, through meadows and woods.

Sleeping quarters were provided in some of the original, sparsely furnished Mission-style buildings. My roommate was a gal who was my age and was eight months pregnant. She was an R.N. and was there attending the course for continuing education credits.

We all checked in by three p.m. and met in a huge room anchored by a massive stone fireplace with an opening big enough to roast an elk in. I immediately noted the diversity of the group. There were many ill people, several doctors, nurses, teachers, and students, some teenagers, and lots of ordinary folk like me. Each had their own story of what brought them there, and all felt privileged to be with Elisabeth for five days.

Elisabeth was a woman who didn't waste time. After a vivid two-hour course description that included lots of personal philosophical tidbits, we broke for dinner.

"When dinner is over," Elisabeth announced, "we will reconvene to get our hands dirty."

The workshop was based on the five stages of grief that is the cornerstone of her world-famous book On Death and Dying. DENIAL - ANGER - BARGAINING - DEPRESSION - ACCEPTANCE.

Most of us who weren't there for school credits were going through one of these stages. This intense experience was specifically designed to help people get to stage five...acceptance...a place of peace.

Elisabeth had many strong beliefs, one of which was the absolute necessity of externalizing your feelings. A safe environment was required for most people to do that, and where we were was that safe place.

It worked like this: one person at a time came up and told their story to the rest of us. After they'd finished, they were helped to a large mattress on the floor and handed a two-foot-long piece of red garden hose and a thick phone book. Elisabeth would urge them to hit the book with the hose and scream! This didn't sound like the peaceful experience I had been expecting! And it wasn't. We started after breakfast at nine a.m. and ended near midnight with two one-hour breaks for meals. It was absolutely exhausting.

Each story took a while to tell, and Elisabeth pushed each person to dig deep. She asked a lot of questions, all of them tough, during this process; she pressed hard and was never intimidated when people pushed back. All of the stories were tragic. I was reminded of a quote my father used to cite: "I felt sorry for myself because I had no shoes, until I saw a man who had no feet." For the last year, I had felt so very isolated with my son's tragedy. Gathering there with all those folks who felt the same way was a comfort. I hoped that this experience would give me some techniques to tuck away in my bag of coping tricks to pull out when needed.

While each story was different, most people fell into a sub-group, with many of them dealing with cancer, either for themselves or their loved ones. Among the cancer sufferers were six men that had a new kind of disease called AIDS. AIDS stood for Acquired Immune Deficiency Syndrome, and it suppressed your immune system to the extent that you were especially vulnerable to cancers and other terrible diseases. It was thought to be passed through the blood, and was afflicting gay men especially, although one of them thought he'd contracted it from sharing a needle and another had it from a blood transfusion. All of them had large flattish black tumors on their bodies. They were young and they knew they were going to die. I had never heard of this condition before and it was very alarming to think about. Most of the other stories were more familiar. Nearly everyone present wept openly over the various stories. There were several young mothers that were dying of breast cancer, and more than a few parents there trying to deal with the terminal illness or the death of a child.

One other mother had a son in a coma. Her son had also been fourteen when he had his accident. He was on a bicycle when he bumped his tire on the curb, flew over the handlebars head first, and smashed his unhelmeted skull on the hard concrete. He had been in a persistent coma state for over seven years. Of course her story hit me like a ton of bricks. Seven years? Dear God. I couldn't imagine dealing with Scott in his current condition for that long. And after seven years, this poor mother was stuck in denial and had not yet moved on to anger. Anger is a stage that's really hard to look at and to properly deal with, as I was to find out, but it is essential for any hope of reaching a healing acceptance. Anger needs to be expressed in an acceptable way, and Elisabeth believed that there would be a lot less violence in the world if everyone learned her tool for dealing with it. This other mother had a hard time getting started hitting the phone book, as I did another day. "Hit harder, hit harder," Elisabeth coaxed. "Who are you angry at for letting this happen to your precious son? Who?" she demanded over and over.

"God," the woman finally sobbed. "I'm mad at God." She was a Christian and believed there was a plan. "Why did he have to take my son this way? Why?" Elisabeth pushed her, demanding she hit the phone book and curse God. The mother then did something unthinkable for a person of her deep and abiding faith. She damned God over and over and over as she screamed, tearing the phone book apart with the hose. She finally collapsed, her body spent, on the mattress.

I spoke with her the next day and asked how she felt after her session. She said she felt exhausted. I asked her if the experience had shaken her faith. "No," she answered after a few thoughtful moments. "But I do feel somehow lighter. I had no idea that so much anger was inside me all bottled up." She gave me the courage to have my own experience on the mat.

I found it hard to get started, but Elisabeth's taunting was impossible to resist. I was surprised at the anger that exploded out of me. I don't believe in God, but I cursed him anyway, and even though I didn't blame Scott's father in any rational way, I cursed him, too, for just having the helicopter at all, and then for pretty much abandoning us after only one year. How could he move on with life and leave us like that? Most surprisingly, I found out just how angry I was in general for the disruption of my own life. I was only thirty-eight years old. I'd had two husbands, one of them abusive, and children since I was seventeen. Just when I was doing great on my own, making plans for my future and earning good money for an uneducated single mother, and I had found a man I was in love with, it had all vanished in the blink of an eye. One of the best gifts Elisabeth gave me was permission to feel sorry for myself and to be OK with being mad as hell about it. "Scream and yell from your gut," Elisabeth advised. "Feelings of grief should never stay inside and be allowed to fester."

Gardens are sanctuaries for me, places that help me feel my pulse. I spent every free minute during those five days meandering along the paths of perfectly manicured and lush plantings and trying to remember when I last felt carefree. I think I was ten.

I arrived home after that life-changing five days exhausted, but at the same time re-energized, which made no sense whatsoever.

Upon returning to my real world, feeling a little more together than I had been before, my efforts turned to finishing Scott's new room. The drywall was ready for paint, and after working on it for two days, I pronounced it done and called the carpet installer.

We moved Scott into his new quarters the day before his sixteenth birthday, a day I wasn't sure how I felt about. The nursing staff tried to be upbeat. I didn't know how he felt. My memories of March 12, the day he was born, were ones of ecstasy and joy. I had a beautiful son...and now he was gone.

I was pleased with the large light-filled windows on three walls of his room, with the fourth wall hosting the door directly into the kitchen. My plan was to turn over the meal duties to the nurses soon, which would give me more flexibility time wise.

Elisabeth told me that when she got back home again, she would come to visit Scott. She didn't drive, and so I picked her up one evening and brought her to our house to meet him. His night nurse, who had quickly become one of our favorites, was working that night. I introduced Elisabeth to both the night nurse and Scott. Elisabeth wanted to spend some time alone with Scott, so his nurse and I made ourselves scarce. After sitting with him for almost an hour, she summoned us back in. I asked what she thought about Scott's condition. She felt that he was aware of his surroundings and situation some of the time, but that he spent a lot of time out of his body. I could certainly relate to that. "What is the purpose," I inquired, "of him being here at all given the gravity of his injuries?"

Elisabeth quietly answered, "He is here to teach everyone that will cross his path unconditional love." It took me a lot of years to understand that pronouncement fully. For the moment, I was just consoled and grateful she had come to support us.

Scott's new living quarters were working out well. There was an entrance directly into his room from the back porch, so the nurses no longer had to come and go through the main front door entry of the house. This gave me some quiet breathing room, for which I was grateful.

By May, we'd settled into a routine. On a stress scale from one to ten, I went from a ten-plus to an eight-plus. Not great, but better. Every night after his dinner, Scott was lowered into a large spa-tub by way of a contraption that was a smaller version of a construction crane, called a Hoyer Lift, and luxuriated in the warm swirling waters until his fingers turned into raisins. Scott is a Pisces like me, and I could imagine how he felt drifting weightlessly around. It had to be heavenly.

Some of Scott's friends had the courage, and I was seeing that courage was what it took at that point, to come and visit him. They, too, found it hard to be in a one-sided conversation. I told them what I did. "If he is up in his wheelchair when you get here, take him outside and talk about his surroundings or just tell him great gossip," I suggested. "He and I always listen for birds, insects, truck, planes, or whatever. If there are any fragrant flowers blooming pick one for him to smell. If it isn't convenient to go outside, another good option is to read aloud from a book. Any book will do," I told them. "It is the sound of the voice he hears that matters." The goal was to keep him stimulated in one way or another as much as possible. I was always holding the thought that maybe something would click in. Although Scott was settling in nicely and his caregivers were all seemingly very competent and confident, I felt the need to take a break. Being sensitive to that need, my boyfriend spirited me away for a surprise respite. It was wonderful having someone else make plans without my having to be in charge of anything. We had a great getaway.

While I was gone, the Braille Institute delivered all the equipment and tapes that I had ordered. They provide these for free to blind and other physically challenged people. The tape deck was some high tech type that played unabridged readings of an enormous body of material. The catalog of choices resembled a metropolitan city phone book in size, and all you had to do was check off which ones you wanted and they delivered them in the mail. How great was that?

It had become necessary to get serious about making some money. I found myself going through the motions it took to get the job done. I had clearly lost the passion for my career that I had felt before Scott's accident.

It felt like my life had been definitively delineated into "before" and "after". "Before", I had a fun-loving, motorcycle-riding son; "after", I watched his shell change from a boy into a man. Carrying so much grief had taken all the wind out of my sails. I could do almost nothing with any sense of joy or excitement.

As summer wore on, I continued to explore every available resource I could find on brain damage. In 1983, all the experts could advise was to hope for the best but prepare for the worst. If the patient hadn't died or gotten better within a year's time, then there was dreadfully little to be known for sure. It became clear that we were flying by the seat of our pants and that anything and everything was worth checking out.

Sometimes I forgot that other hearts were also breaking from Scott's accident. One of them was his buddy down the road. It's hard to imagine losing your best friend at age fourteen. In the "before" years, Scott's pal's mother had welcomed Scott into her fold along with her own four active sons. He loved spending time in the company of their wild family, and she too was greatly mourning the loss. She became a daily and stalwart support for us. Most mornings, she walked up the winding road to have coffee and visit with Scott, his nurse, and me, and she did her best to cheer us up.

Late in the summer, a newspaper article drew my attention. It told of a controversial treatment for brain-damaged people. Psychomotor patterning was based on the belief that passive movements could influence the re-development and re-structuring of the brain. Two men pioneered the idea that from infancy, all humans went through certain physical stages that correlated to stages of brain development. As children became mobile, they rolled over, then scooted, then crawled, and finally walked. These men had a theory that skipping or altering one of these mobility stages could retard brain development. They believed that if enough therapy was provided in a very precise way, it was possible for a person who had been brain damaged, even to the extent of total paralysis, to regain their mobility. In the eighteen months since Scott's accident, I had not read such hopeful information. It was very exciting to read about. I knew it sounded like so much pie in the sky, but I couldn't not do something after reading about it. The west coast clinic for this therapy was only a hundred miles away.

After reviewing all the information, which was well presented in a brochure, along with copies of various articles I found at the library, I shared it with Scott's father. He was not as excited or hopeful as I was, but he agreed that we should look into it further.

It was a transportation challenge to get to Scott to the appointment to see the doctors about a possible patterning program. We finally found a van without back seats that we could borrow and were able to lay Scott down comfortably with lots of blankets and pillows. This was the first time we'd ever moved him alone without the benefit of hospital equipment and personnel and I was very nervous.

The patterning evaluation was certainly a departure from the mainstream medical approach. Both the doctor and staff had totally different techniques of analysis and prescription that were far from traditional medicine. "We are optimistic our program could benefit Scott," they pronounced, "but of course every case is different. We only recommend programs, and we can't give guarantees." After nineteen months, I understood the odds, but I still had to pin my hopes on something. If we decided to proceed, and it was still a big "if", it would be a gigantic commitment.

The program wasn't complicated, but it was exacting, and sounded both exhausting and overwhelming. The clinicians felt that if Scott's body could be maneuvered to imitate crawling motions, his brain could possibly be re-patterned into connecting some new pathways that would enable him to move on his own again. The concept of learning to crawl before you can walk made sense to me. Accomplishing the task of moving all of his limbs in these independent motions seemed impossible logistically, at least to his father.

This was how it was to work: five times a day Scott would be given certain strong scents to smell, like cloves, mints, and coffee. Five times a day, he needed to be stimulated tactically, for instance, by rubbing a coarse towel on his skin and then rubbing something soft on it like a chamois cloth. That part of the program could be handled by the nurses and me. The daunting part of the program was that three times a day, it would take five people to move his head from side to side and make each of his limbs perform a crawling motion that would scoot him down from the top to the bottom of a padded eight-foot ramp that inclined off the end of his bed. After he was made to artificially crawl down to the bottom of the ramp, he was to be rolled from side-to-side five times. Then he was to be lifted back up to the top of the ramp and everything was to be repeated four more times. All of these exercises needed to be performed at least six days a week. Whew!

At this point, I was feeling like I had managed to hang on to only a shred of my previous life, and I could feel even that slipping away daily. My once full business, social, and love life had come to a screeching halt. Hardly anyone called me for fun anymore. The very word "fun" seemed to have vanished from my vocabulary. My love relationship was fading, too. We talked and saw each other less and less, and I heard about get-togethers after the fact more often than not. This experience was isolating me in a very unhealthy way, but I didn't know what to do other than to just go with it. I was constantly battling depression and exhaustion, and I was verging on collapse once again. That can't happen, I told myself. Just think about survival and put one foot in front of the other. I told myself this so often that it became my mantra.

Any energy I was able to muster at that time had to be directed toward getting back to work and making some money. But dealing with buyers, sellers, lenders, and all the other branches of the trade was stressful beyond belief. It was just not as easy as it had been "before" to juggle all the components needed to complete a smooth transaction. I found myself less and less patient and caring. Everything seemed so superficial, but faking it didn't feel right either. The added burden of impending financial insolvency only tipped me closer to the edge of panic. So, that was where my focus needed to stay. My old life was gone; here was my new reality.

In time, I did close enough deals to keep the wolf away from my door for a while. I began thinking seriously about making a decision on enacting the patterning program.

It seemed like we could make it work with twelve people a day in addition to the nurses and myself. That was sixty people a week if one person each took one shift. As these big numbers rolled around in my mind, a glance at the calendar showed me that the holiday season was approaching. The new year seemed like a better time to think about any huge rehabilitation effort.

You gotta love a man that cooks, and I loved the one that prepared the entire Thanksgiving Day feast at his house and did it with aplomb. What a guy. It was a good day, filled with friends, and it was a big reminder that I still had things to be thankful for.

After Thanksgiving, we came to the second Christmas since losing Scott. I found very little reason to be jolly. My daughter added to my already miserable state. Her reckless lifestyle choices went against every fiber of my being, and we were pretty estranged. Having children had not brought me any joy for a while, and I prayed that I would still be standing on New Year's morn.

YEAR #3 1984

I suspected that Scott's sense of humor was intact. He had made some guffawing sounds a few times, but we weren't sure if he was really responding to whatever had been said or done until I dragged my old violin out one evening. My skill set was pretty much confined to "Twinkle Twinkle Little Star", and when I began scratching and screeching on the strings, Scott erupted into gales of laughter that went on for minutes until he was laughing so hard he could hardly get his breath. We were speechless at first, and then both the nurse and I started jumping for joy. He was "in there" someplace. Alas, try as we might to get him to laugh or smile for us when we asked him to, he wouldn't or couldn't. But when we started telling him jokes, mainly off-color ones, we could get a laughing response. It was like his sense of humor was still intact, and it responded when something was funny beyond any will or control of its own. Suppressing laughter is almost impossible for anyone. Something is either funny to you or it isn't. Many times, when something is funny, even if it's inappropriate, the laughter escapes you absolutely spontaneously. Scott's response was equally spontaneous. When we asked Scott to make a conscious laugh or a sound for "yes", he couldn't do it. So his funny bone was still active, but it was not accessible on cue, and it was not going to be the means of communication with him for which I had so desperately hoped. I began to feel like a total failure. All I could do was sit and watch my son's body change from boy to man. He had been no angel before his accident, and sometimes he could be a downright punk, but there were still the times when he would just curl up in my lap and confide in me like when he was a little kid. I missed that so much. The vision of recovery became dimmer and dimmer, but I'm not a very good quitter. I decided we had to take a run at what seemed like our last hope: a patterning program.

Volunteers would be the key to pulling it off, and we would need a lot of them. I began compiling a list of different ways to get the word out. Our local newspaper seemed like a good place to start. They had dutifully run several stories about Scott and his condition. Scott's 4-H Club had wanted to help in some way, and so we called to enlist any kids interested in getting their community service badges. Lastly, I started contacting various organizations I had once belonged to.

After I had my game plan, I met with Scott's father. When I finished explaining how it could work, I asked him, "Please help me with this. I will probably do it in any event with or without you, but being a team would be so much better; for Scott, too. We have to give him every chance."

"How long will we keep trying if we don't see any results?" he queried. I suggested that we should give it a year. His father made a one-year commitment to give it a go. I told the subsequent respondents that a year was what I was asking from everyone. The date was set for an informational meeting at my house. I was terrified. First of all, would the number of folks needed to pull this off step up to the plate, and would it work?

The small community where we lived was tight knit, and I loved being part of it. In the years before, I had been active in a business or a volunteer basis, but I had never been among the needy myself. It was a very uncomfortable role for me, so much so that beforehand I practiced being relaxed about it.

When the evening came, it was a full house. I felt overwhelmed with emotion and gratitude. At least seventy people crammed into Scott's quarters to meet him and find out what would be required of them.

When the crowd started arriving, they were greeted by me, practicing breathing deeply, and Scott's favorite night nurse. We then introduced them all to Scott, who even though or maybe because he just lay there had the capacity to take some people's breath away. Because his injury was to the back of his head, he retained his "frozen" movie star face. Scott's father and girlfriend were supposed to have gotten there early, before the arrival of the potential volunteers. They were to help me get ready for the demonstration we needed to make. Instead, they showed up late, in the middle of the meeting, and made little effort to be involved or cordial with anyone at all. I was furious and my anxiety level soared. They simply dutifully performed the demonstration with me and left.

"Teams of four will be needed," I explained to everyone and pointed to the big paper chart tacked up on the wall. "In order for this to work, each empty space needs to be filled." Then came my passionate plea to make a weekly commitment for a year. "The idea is to put out as much positive energy as possible during that time," I told them, "but if the end of the year comes and we are not seeing any changes in Scott's condition, we will at least all know that we gave him our best effort." I was trying hard to be realistic with myself and the others, but I did so want a miracle. Maybe it would be on television, it would be so amazing. Stranger things had happened.

When the evening ended and everyone had said their goodbyes to Scott, the nurse and I saw that every space on the once-blank chart had been filled. We were so happy we were positively giddy.

Unfortunately, Scott's father had disappeared without even saying goodbye, so I didn't have anyone except Scott and nurse to share the joy with. I never knew what his behavior that night was about, but he had told me weeks before that he and his girlfriend would commit to an end-of-the-day slot. Not having him honor his agreement would be a very big disappointment. Not only for me, but for Scott. He might be thinking that his mother and father were not a team any more for him, and maybe he would be right. It sure didn't feel like we were.

We started our journey into the great unknown on February 2, Groundhog Day. It just might be the perfect holiday for me. It's secular to be sure and a celebration of nature. Either winter was over or it wasn't, and that always brought happiness to some and gloom to others. Four volunteers came, with the on-duty nurse being the fifth that first day. The first session of the day at ten a.m. put Scott through his program five times, and took about an hour and a half. Another group of four came at one p.m. and followed the same routine. The fifth session of the day came at five p.m., and lasted less than an hour as it went through the program only two times. That was the session Scott's father and girlfriend committed to. I was the #1 substitute for all three sessions, on call if anyone couldn't make it.

Scott's first week of patterning went well. Each was a hands-on session with me in the demo mode. It wasn't a particularly complicated routine, just repetitive, and it didn't take long for everyone to get the hang of it. There were a lot of new names, faces, and voices for Scott, the nurses, and me to get acquainted with. We were impressed with the level of enthusiasm and optimism that these generous souls displayed and looked forward to getting to know them all a lot better. I had to admit that I felt this village of helpers was also a support system of sorts for me, something I sorely needed.

March brought another loss that I didn't want or need, but one that was not totally unexpected. My boyfriend of almost four years had been making himself scarcer and scarcer as these depressing times wore on. Scott's accident had been hard for him to cope with, too, and so it was no surprise to learn that he had someone new in his life. Now, though, there was no one to hold me, and that made me feel even sorrier for myself than ever.

John Irving wrote about a woman who was so depressed that it was all she could do to "keep passing the open windows". I understood just how hard that was sometimes. I didn't feel like being around or talking to anyone, and it took everything not to get sucked through or jump right out a window. It was harder and harder for me to be around happy families. I just wanted to be left alone. The second anniversary of Scott's accident, his birthday, and my birthday came and went and nothing was better.

By May, there were still no changes. We'd been patterning for three months and all the teams were on perpetual alert for even some small sign of progress. Everyone loved coaxing him to laugh and prided themselves when they were successful. It became our shared goal, and we succeeded more and more regularly. Dirty jokes were always a sure thing, but he often erupted just listening to the various voices telling stories of the local goings on. We all hung our hats on the notion that if some humor connection was still there, maybe other ones would re-connect in time. My life six days a week totally revolved around the pattering program. There were two groups of four that I found especially endearing. One group was two senior couples that had been friends even before embarking on this challenge and their commitment to Scott. Their enthusiasm was such that they even had T-shirts decorated with lettering that said "Scott's Team". It was so very touching, supportive, and comforting. The other group I'd really gotten a kick out of and had become particularly attached to were the volunteers from Scott's 4-H Club. They were a bit younger than he was, and so not all of them knew him well "before" but one gal who lived in the neighborhood had had a crush on him and had taken it hard when he was injured. She and a cute guy were always working on the opposite sides of the table that Scott lay face down on for his limb patterning movements. I watched as they started making eye contact in that "special way" more and more often. It made me wonder if Scott would ever experience the all-consuming gooey feelings one gets from falling in love. It was all so bittersweet.

By June, there was still no progress. It became harder and harder for me to stay positive and keep my energy level up. Trying to work selling real estate had become almost impossible. I tried to stretch out the last of my meager savings, but still found myself slipping into debt. Everything looked so grim. Scott's father and his girlfriend were still coming together for the last patterning shift of the day. Watching them made me wonder just how soon she was going to want more from him than just living together. Knowing her even as little as I did, I was sure she was putting pressure on him to get married, which of course meant he and I would actually have to get divorced.

We never talked about that or anything else during those evening sessions. They just came, performed their patterning obligation, and then left as quickly and quietly as possible. They seldom lingered to visit alone with him. What could Scott be thinking?

June 27 was my mother's birthday. She would have been sixty-four. It made me wonder: if she had lived, would Scott be okay today? Fifteen years ago, when Scott was only two years old, we were thinking of moving to Hawaii. My mother and youngest brother had been living in Kona for two years. She worked for a small airline there and had an "in" with a helicopter tour company that was looking for a good pilot, which Scott's father was. I often played the "what if" game. What if we had moved and she was still alive? We'd all be living happily ever after in that tropical paradise. I wondered what my mother would have been like at age sixty-four. It was hard to imagine her slowing down, but I guess that would have happened. Most of my close girlfriends still had their mothers in their lives and I got so envious seeing them together still having fun. I missed my mother more than ever.

By July, I was going crazy with boredom. I needed something to do besides wallow around on standby duty, and I needed to make some money. What to do? Working regular hours was not an option because I needed to be home to sub when necessary. Finding a creative and profitable pursuit while we all continued to breathe deep and wait was becoming paramount.

"As crazy as it seems," I told a friend, "I'm going to build a spec house on the lot I have left from the land division I did a few years ago. A project of this sort will give me the flexible hours I need to step in for any volunteer that can't make it on any given day and will give me a diversion and sense of positive accomplishment, which I haven't experienced in a long time."

"Well," my friend replied, rolling her eyes, "you've always needed big projects to work on. This might be perfect for you right now, but I don't know how you handle the load of stress you are already under. This sounds like taking on even more to me."

"I understand and so appreciate your concern," I replied. "I really need to lose myself in something else right now, and of course selling it will bring me some needed financial security for a while. I still have the plans to my little dream house where we're living now and you and others have always admired it. Why not replicate it?"

Obtaining a loan to finance a project of this sort meant that I would have to call my banker, who I hadn't seen in two years, and invite him to a double-martini lunch.

We were five months into the patterning program and there were still no changes. The teams continued to be encouraging and supportive and brought Scott jokes in book form as well as on many cassette tapes. Some of the jokes were pretty raunchy and so didn't get played around the group of the 4-H members, but the adults loved to hear Scott laugh at anything so they kept the comedy coming.

My building /diversion/hopeful financial salvation project got a green light from my banker. It was full steam ahead. I felt relieved to have something else to focus on.

When a girlfriend called me to go out dancing, I thought about how long it had been since I'd done anything like that and accepted her invitation. It felt great to move my body and lose myself to the music, but I probably had too much wine because the next morning brought a phone call from a man I must have given my number to. He was asking for a date. As lonely as I felt, I just couldn't bring myself to face explaining how complicated my life was just then. I just couldn't.

Ground was broken on my new building project. When the grading was completed, I threw myself into getting the landscaping established. Because this project was less than three miles from our house, I was able to easily make several trips a day in between patterning sessions.

Lots of Scott's volunteers came from different churches in the valley. While they all knew that I wasn't a parishioner at any of them, they never preached to me, although some of them did ask me to join them in prayer before beginning a patterning session, which I always did. I often wondered if this whole trial would be any easier if I were a person of faith. Did they, the believers, really get as much comfort from their heavenly connections as they claimed? It's hard to imagine that even an ardent believer could watch their son endure this kind of suffering as he lay virtually unconscious without questioning the sense of justice in their god's plan. Sometimes I wished I could just click my heels together and be instantly flooded with the comforting faith I'm told that being a believer would bring. Scott was not getting better and we were six months into the program. Even though Scott's body was not improving or growing much, his hormones were changing, producing a beard where a smooth cheek had been before.

It was no real surprise when Scott's father called to tell me he was filing for divorce, but I was in shock nevertheless. "Don't worry," he calmly assured me on the phone. "I want a fair and quick settlement with us dividing the ranch equally." The long-range plans for the joint plot we had worked so hard on had been that we would both benefit from the harvest of our nearly-mature avocado trees. I knew that being a farmer was a crapshoot in the best of times, but having some kind of income for my retirement in the years ahead was why I had worked so hard. Having to worry about how to pay the bills while coping with my current state only added to my stress, and any monetary relief would be welcome. After being separated for eight years and working hard to stay friends for Scott's benefit, we were moving on, or at least he was. We were to meet our mutual attorney together the next week to finalize and sign papers.

Scott had seizures almost daily around this time, so the doctor changed his meds again. Watching him suffer was becoming unbearable. It was all so painful, I was relieved to find myself floating from above a lot. And then things got worse.

Scott's father's business partner called to tell me that their health insurance premiums had gone up again. At the time of the accident, the group of three families was paying $350.00 per month. "Carol, the insurance premium has been raised again, to over $1,000 per month. That's almost triple what they started out at. I think you should start thinking about other options if the premiums bills become much higher."

I was in shock. "What other options?" I asked him. "We only have that one insurance coverage now, because my own policy reached the limit and was denied renewal."

"I know this has been hard for you," he sympathized, "but our company simply can't absorb many more increases. I just wanted you to know what we are dealing with as far as Scott's coverage goes."

As bad as this had been for us on an emotional level, I simply couldn't imagine having had to worry about it financially, too. I knew that lots of folks weren't as fortunate as we were in this regard. Good insurance was expensive and hard to come by, and that's why I had felt grateful for that one lucky part of our story. The remaining policy that covered Scott through his father's business had no limits. I had assumed we were covered until we no longer needed it. The health insurance company had written a rare policy, one I was sure they regretted issuing. I had a feeling that these last few premium raises were the beginning of a trend. With no end to Scott's expenses in sight, they were probably trying to figure out a way to cap their losses.

Because we were six months into the patterning program at this time, the clinic asked me to bring him back in for a re-evaluation. I could have told them over the phone what the results had been so far: nothing. But they insisted that it was imperative that they see him in person. I needed to figure out the logistics of transport again, which was no easy thing.

I was trying hard to stay positive and looked for any silver lining in the clouds. One ray of sunshine was the wonderful group of volunteers that continued to arrive and give their all for Scott. I guessed that he enjoyed the 4-H members most of all. When they came, I chuckled to myself a lot. I loved hearing all the small talk they had between themselves. We heard all the gossip about school and sports, and lots of plain old silliness. Scott laughed a lot, so he had to be loving it. Over the last six months of weekly visits, it had become very obvious that the "love bird" couple had expanded their relationship outside of the time they spent patterning Scott. It was very sweet to watch them touch each other and make goo-goo eyes.

September brought the finalization of my divorce and property settlement. Scott's father had assured me that it would be a fifty-fifty split, so I was dumbstruck when I sat down in the attorney's office and read the paperwork.

The settlement terms had changed drastically. I was no longer to retain my portion of the ranch at all. It was to be sold or one of us was to buy the other one out. He of course surmised that I could never pull that off. He, however, was still working and collecting a paycheck. He must have felt that he was very much in the driver's seat. Then the real bombshell was dropped. He intended to buy me out at a fraction of what it was worth.

Never mind that the ranch had been my dream, too. Together we had bought the twenty-five acres of nothing but sagebrush and rocks. Together we had installed over half a mile of water line to the hilltop where we lived in a 10 x 50 trailer for four years, the first three months without electricity or a phone. And together we had constructed a complicated irrigation system to nourish the two thousand seedling avocado trees we planted and nurtured. It was to be our retirement income as the trees grew to maturity and into full production. I could feel the tears coming, and I was trembling more and more the further I read. This couldn't be happening. I looked up, and Scott's father's eyes met mine as I commented through clenched teeth, "You know, two traits you have never exhibited before are malice and greed. Why are you doing this?" He quickly averted his eyes as he shrugged his shoulders. He said nothing. I had to think that the new settlement changes were prompted by his wife-to-be. I didn't sign the presented agreement. I just got up and left without saying another word. If the window had been open in that office, I would have jumped out right then.

Scott's father and his girlfriend didn't come to patterning that evening. They never came again, and they never called. It didn't take long for the reality to set in that I needed my own attorney.

There were still no changes in Scott's condition. I had to make arrangements to transport him to the clinic by myself. Crap. And because his father had disappeared, now I was also worried about the insurance staying current. We needed a back-up plan in case the company succeeded in worming out of their obligation.

Having a back-up plan meant getting Scott cared for financially if the health insurance got canceled. I had much consulting and deliberating with my friends and other smart folks. They all gave me the same advice: "If this accident had happened to anyone else, a liability lawsuit would be filed against the helicopter company on behalf of the victim. You need to put on a new hat," they encouraged, "your tough caretaker one. Just bite the bullet and do it."

The day of Scott's clinic appointment came and I'd found a van to borrow. He and his nurse and I hit the road. I knew there would be help once we got to the clinic, but we were on our own getting all loaded up. Maneuvering him inside into a prone position, fitting in his cumbersome wheelchair, and finding enough room for his nurse to be buckled up was a lesson in making use of every inch of space. I was a nervous wreck. I hoped for smooth sailing down the freeway. And whew, we did it! I imagined that Scott enjoyed doing something different. Just hearing the traffic and horns and the feel of the engine running seemed like it would be a good change of pace. When he was up in his wheelchair at home we always went outside, but we couldn't go very far because we lived at the bottom of a hill, and it wasn't possible to push the wheelchair uphill.

Even though the trip itself went well, the appointment did not. Because Scott had not made any progress, they gave him a CT scan. They found fluid on his brain that was causing pressure

Their solution was to put a permanent shunt in his head that would continually drain the fluid off. It would of course involve another operation and then constant monitoring. I felt paralyzed by this pronouncement. What a decision! How could I put him through any more? What if that didn't work either, and he suffered more for nothing? I was not prepared to make an immediate decision right then, so I thanked the clinic, and we packed up and headed home.

Scott's favorite night nurse was waiting for us in the driveway when we arrived and she swooped her boy into his nest and got him comfortable. She outdid herself that night. He got an extra-long bath and as she carefully dried him off and swung him slowly in his Hoyer hammock, she played their favorite song, "The Wind Beneath My Wings" by Bette Midler. "Scott is my hero, like in the song," the nurse shared with me. "He is so tough, so strong and so brave, fighting as hard as he does to live." As I heard the music drift through the wall into the kitchen that night, I was so grateful for having this loving woman to take care of my son. I would think about the rest tomorrow.

After all this time, almost every weekday morning around eight, our neighbor, the mother of Scott's best friend, still walked up the hill to visit and drink coffee with us. For the last couple of months on those mornings after our gossip session, we had been listening to The Wind in the Willows, courtesy of the Braille Institute tapes. Each visit brought another chapter and with it some sense of continuity to the day, and we all found ourselves looking forward to the next installment. After that, the daily patterning routine started, with the flow of people coming and going all day. I treasured the quiet mornings before that started.

The question of whether to perform another operation on Scott to implant a shunt weighed heavily on my mind. After talking to a couple of different doctors and showing them the latest scan, neither of them could see any benefit to performing the procedure. With that information in hand, I was lucky to catch Elisabeth at home and asked if I could run a confusing choice by her. She invited me to her house for dinner to talk it over. I knew she would not be shy about giving advice. I valued her opinion and appreciated her continued support. I also wanted some help with my ongoing unspeakable urges to commit atrocities against Scott's father.

What a treat it was to have her all to myself as the chef of a home-cooked meal that featured several courses made with her own ingredients straight from her couple of acres of paradise. We talked long into the night. She shared many of her visions on how she felt she could best affect the world, starting at a community level. She thought that every hospital should have a sound-proofed screaming room that people would be encouraged to visit and release some of whatever agony had brought them there. And because our society has lost their generational ties from cradle to grave, she had a vision of something she called an "E.T. (Elder-Toddler) Center", where nursing homes combined with day care centers, with the nursing home residents providing some of the child care for working parents. I loved this idea so much. I believe every child should have as large a support system as possible. And geezers love and cherish little kids. What a win-win, and so cost effective. After all, Elisabeth was a practical Swiss.

Her advice regarding whether to do the shunt operation tipped the scales for me. Like the others I had consulted, she felt it was a procedure that was of an unknown value. "And in Scott's case especially, I worry that it would create an opportunity for constant infections," she said.

Solo decisions are an immense responsibility, and of course there is always a real possibility that a choice isn't correct. I made the decision not to do the shunt. I hoped I was doing the right thing.

Eight months had gone by since the start of the patterning program and we still weren't seeing any benefits. The only positive effect I saw was that Scott seemed to enjoy the company, and the movements of his limbs and muscles were keeping them limber and less likely to start contracting or stiffening, which is always a concern for those in his condition.

It was all very disheartening. On the night before Halloween, which I'd come to dread as the official start of the holiday season, I was sliding into darkness again. After I lost my mother I had a hard time staying jolly during this last quarter of the year, but at least "before" I had my children to enjoy; now I didn't. Scott was a ghost and my daughter was missing in action. The days were getting shorter, which also did not help my mood.

The building project that I had started was keeping me somewhat sane. It was my reason for getting up in the morning. Sometimes I would drive two or three times a day to the job site and back, losing myself in whatever chore needed completing.

As the year drew to an end, I hired an attorney that I hoped was up for what had become a nasty divorce. Scott's father still had not been seen or heard from, even though he drove past our driveway every time he went to or from his home at the ranch.

Thanksgiving brought me a great surprise, and something to really be thankful for. My daughter seemed to be headed in the right direction again. She was enrolled in school, and she and a girlfriend had rented a house together. She and her roommate invited me and her roommate's mother to a full-on turkey feast at their place. I'd always thought it a benchmark of adulthood to get your turkey badge. It felt so good to pass on that ritual to her. Having her in a good place went a long way to getting me through the rest of the holidays. That year, I felt strong enough to escape for a while to Canada and spend some time with my brother and his family.

Before leaving for Canada, I hired an attorney to file a claim against Scott's father's company liability policy for whatever the maximum was. It was another agonizing decision.

It had become a challenge to keep up the patterning program schedule. Since Scott's father and girlfriend were no longer coming, it was a lot harder to keep the slots filled. I often wondered what Scott was thinking regarding his father. Was he angry with him for just disappearing? Was he hurt? I knew how I would feel: unloved and depressed.

My Canadian family and I had a wonderful reunion. Victoria, British Columbia, is the quintessential Christmas setting. Waves crashed on the coast just a short walk from my brother's house. Another short stroll was to the totally enchanting Empress Hotel, decorated to the hilt and surrounded by a shopping district to die for. I especially loved all the tea parlors that everyone frequented most afternoons for a relaxing ritual; we Americans could learn a thing or two from them.

Being gone that long was a first since Scott's accident. I was relieved to return and find him well cared for. His wonderful crew was supplied through a nursing service and so the scheduling logistics of who was coming and going weren't a worry for me. What I did get nervous about was if a new nurse came to fill in when I was gone that long. I felt better being there to supervise, but we'd been doing this for so long now that I was learning to take deep breaths and let go.

YEAR #4 1985

There is always an upper limit to the money that any company's liability insurance policy has to pay out. Scott's father's policy limit turned out to be a pretty paltry sum to begin with, and even less after the lawyer took his one third cut. If the health insurance company raised the premiums much more or canceled the policy altogether, the money wouldn't last long. All my fingers and toes were crossed that the health insurance company would continue with their obligation.

February brought the dreaded deadline for ending the patterning program if there was no progress, and there had been none. How to wind down? These wonderful giving volunteers were a part of our lives, and we theirs. It was very disappointing and depressing. For two and a half years I'd tried so hard to keep the faith, had read every bit of information I could get my hands on, and had just kept thinking that I could somehow "will" him better. Quitting our patterning program was giving up. How could I do that? I missed Scott so much it was almost unbearable. The thought of him never recovering was something I was not sure I could live with. I wanted to hear his voice again. I wanted to hear the roar of his motorcycle coming down the driveway. I wanted to hear the sounds of him and his buddies yelling at each other while playing basketball in the front yard. I wanted to hear him tell me he loved me and that I was the best mom ever. I wanted to feel him hug me again. I loved him so much. That he wouldn't be here when I grew old was unthinkable. It was time to either wake up from this horror or start looking for open windows.

The three-year anniversary of Scott's accident came and went and it felt surreal. Sometimes I just found myself sitting and staring into space for hours at a time, trying to put the pieces together. I was having a hard time remembering what our lives were like before. I just knew I wanted them back.

A week later, I sent notes to all of Scott's volunteers to thank them for an amazing year's effort and to say that it was time to quit. I'd always been a bad quitter, but I didn't know what else to do. My mailbox started filling up a few days later with cards and letters of hope, support, and encouragement. These selfless friends had been a constant source of strength and inspiration and would be long remembered and cherished.

When my fortieth birthday came, a few friends tried really hard to create a cheerful evening, but it was an exercise in futility. After three years, what was the use in pretending? My wild and carefree years were over.

The next excruciating decision to be made was what to do about a long-term living and caring for situation for Scott.

Scott's eighteenth birthday was a horrible day for me to get through. The nurses wanted to make a big fun deal out of it and I wanted to crawl in a deep hole with a bottle of gin and suck my thumb until it was over. For people that never knew him before, it was much easier to accept him as he was at that moment in time. They didn't know him as a fun-loving, energetic scallywag who could always make you laugh. For me, it was not a day of celebration but a day of even further mourning. Of course I didn't know how he felt about his special day. Was he happy just to be alive, even in his present condition? Did he wish he were dead? Did he comprehend anything about the day at all? That was one of the hardest crosses to bear, not knowing anything about how he was feeling. Any means of communication would have been a monumental relief.

At this age, we should have been getting him ready for college. Instead, I had to shop for a nursing home to place him in. How could I do that? How could I put him in an institution surrounded by strangers that he couldn't even tell how he was feeling. He would be all alone and no one would ever come see him. How could I do that?

I felt like I had reached my capacity to cope, and I slipped into a suspended grief state again. It was so hard not to know how to pace myself. It seemed there was only a black hole at the end of every tunnel I looked into.

It was good to have the diversion of building a new house, but it wasn't as much fun as my previous projects because of the cloud I was under. When I was at the job site, it was easy to escape into the creative process of what to plant where, which color tile would work best in each situation, and how everything would look when it was completed. The minute I pulled back into my home driveway, reality would come crashing back. I knew what I had to do. It was time to give up. I had to locate an acceptable care facility for Scott.

This time of year brought back more memories of Scott and me "before". Another small, fun, and necessary bit of income I relied on yearly was the sale of a commercial flower crop growing on my two-acre home site. Looking out my large picture windows and seeing all the neat rows that melted deliciously from one color and hue to another reminded me of a beautiful tapestry, a gift of art from Mother Nature. In late spring, the blooming stems would be cut, tied in precise bundles, and left down in the fields in five gallon buckets of water. After school, Scott would load the full buckets in the back of the truck. When the back of the truck was full, he and I would make the one-hour drive to the coast to unload them at the wholesale destination. It was a given that we would reward ourselves with a yummy dinner, usually Mexican, our favorite, and then contentedly make the drive back with the load of empty buckets. That ritual was repeated daily until the fields were brown once more. I missed those times.

That mission was accomplished that year with no real joy, and my thoughts then turned to the grim task at hand.

Locating a suitable permanent place for Scott proved to be easier than I had anticipated. It only took one phone call to the rehabilitation hospital where he had once resided to find that there was a long-term facility especially designed for brain-damaged patients in a city two hours north of where I lived. After a visit and tour, it felt like a much better option than a traditional nursing home, even though it was further away. The administration and staff were well trained to care specifically for brain-injured people, and each patient and their family were assigned a social worker for emotional support and advice. With a heavy heart, I made the call to the insurance company with all the details they would need to approve that option.

While waiting for their call back, I somehow found myself volunteering to head up a tree-planting project for the town. We would plant the main road with a thousand donated eucalyptus seedlings, all in one day. Recruiting volunteers had become second nature for me. We got the job done with lots of help on a Saturday morning, a project that in a few years' time would greatly enhance the entrance to our little country 'burb. That Saturday, before I met with anyone else, I planted one tree by myself, in a very special place that I would always remember, and dedicated it to Scott. I wondered if he would ever return here again. It was a great place to raise kids. Both of my children had pretty idyllic childhoods. They enjoyed the freedom of wandering through the citrus and avocado groves and over trails through the sagebrush valleys with their unlimited opportunities for adventure.

The support we received over the years from our sweet town was priceless. Even though we had stopped patterning, some of his former volunteers still came by to visit from time to time. I know Scott enjoyed the company. He was always happiest in a big group, a real people person, and the more chaos the better. For that reason alone, I was relieved when the call came from the insurance company that he would be covered in his new living situation. The nurses thought he would be happier in a group setting. Even though he was blind and couldn't participate at all in the activities, he would be able to listen and hopefully derive some pleasure from just that alone.

The week before his moving date was rough. I had begun to notice a pattern in regard to my coping mechanisms. When there was no choice but to be strong, I could do it, but there was always a price to pay. The day after we'd set the moving date, I could feel myself slipping into the dark hole again. It was almost starting to feel familiar. It had happened enough times that I knew it would come back, I was just never sure when. It was strange to be catatonic for periods of unknowable lengths. It seemed like I would start coming back when my sides were so sore from sobbing that I would guess that crying had been what I needed to do. When I went down into the darkness, it was something I had no control over at all, and it felt like it covered my whole life. But it seemed like now I could almost always hold it together when I had to, and moving day would be a test of that new skill.

The insurance company paid for an ambulance to transport Scott the hundred-odd miles to his new home. My daughter and I followed in our own cars. I was grateful beyond belief that I didn't have to perform this move by myself. She and I saw little of each other in those times. Losing her brother had taken an enormous toll on her, too, so I was very pleased she took the hard step to be involved.

Scott was going to have almost everything he needed at his new place, so there wasn't much packing to do. The insurance company had purchased a lot of special equipment for him over the years that had been needed at home but would be needed no longer. I knew that it all had to go, and soon. I wasn't even sure I would be able to continue living in that house anymore. Of course, the biggest reason was all the memories it carried of Scott and his sister and I doing pretty darn well in that nest. I didn't want to live in a house full of the past. Compounding the stress even further was his father living on the same road. Sometimes when we passed each other it was all I could do not to crash my car into his. He always looked the other way, and so he wouldn't know the crash was coming until it was too late. SMASH! "Oh...sorry!" God, I hated that son of a bitch.

Thank goodness it was a fairly smooth transition for Scott to his new home in the city. His nurses had a very hard time saying goodbye, especially his favorite night nurse. She bravely told Scott, "Honey, as long as I can drive I will come see you, and I'll bring Barrie too." Barrie was a poodle that she always brought with her to sleep with Scott. "And remember, it will be closer for your grandmother to come visit," she assured him.

Scott was the youngest of nine grandchildren. Losing him had been completely devastating for his grandmother. She had a very hard time seeing him the way he was "after" and, like all of us, she found it awkward to talk to him in a one-way conversation. I recommended that she try reading to him or taking him outdoors in his wheelchair. When she started doing that, it became easier for her and I knew Scott liked it, too. Still, she could only come to visit him every few months because she'd reached the age when driving herself was no longer an option, so she had to depend on others for transportation. With him closer, she would be able to make the trip more frequently.

The facility that was to be Scott's new home was tucked away on a side street in a neighborhood that was transitioning from residential to commercial. Upon arrival, we were promptly settled into a large, bright and airy room that Scott would be sharing with a man who was recovering from a car accident. His new roommate had a much higher level of awareness than Scott did. He could talk a bit and move an arm one year post trauma.

The sixty-bed home felt like a hospital, a bit on the sterile side, but the administrator and staff were knowledgeable and caring. One of the first people we were introduced to was our social worker, who we were told was an advocate for us. That sounded very good. After we got Scott settled in, it was dinner time. I fed him. My daughter took her own car home. I stayed until the staff told me it was time to leave. Like the nursing staff at the first big university teaching hospital Scott had occupied for the first four months after the accident, the staff in his new home came in a variety of colors and accents. Lots of young women from the Philippines, Mexico, Guam, and other countries became nurses to get citizenship in the United States, which had a nursing shortage. These immigrants were not bad nurses, but it did seem to me that if the profession paid better it would be easy to fill the positions with people in our own country that needed jobs. But nurses, like teachers, don't seem to be as highly valued as some other professions. We'd rather have things cheaper, so we import our nursing skills for the most part, especially in our cities.

It was lights out at eight p.m. I left with apprehension to find a room for the night.

The next morning I found Scott had been well cared for, and that evening I left him to the care of strangers. I was in total despair. Driving home, I sobbed so hard that I could barely see the road. The next day I didn't even leave my bed. The day after that found me trying to get up the nerve to go into his old bedroom. "I never cleaned out his closet," I told a friend. "I really did expect him to get better. Even though I know deep inside that's probably not going happen, I just can't bring myself to go through his things." My sweet friend volunteered to come right over and help.

The house was so quiet, it was eerie. For most mothers, the segue into an empty nest is fairly slow. Both my children were now gone from home and I was only forty years old. It was a vision that I hadn't given much thought to until then, and I certainly hadn't planned for it. My nest was ripped apart so quickly and unexpectedly that I hadn't had time to process it. Keep breathing.

Because Scott's move to his new care home was now going to cost the insurance company a lot less money every month, I assumed the premiums would go down accordingly.

There was still no word on the liability settlement case, and the divorce settlement offers kept getting more and more ridiculous. If I was going to move on, I would need the money to do it. The uncertainty was driving me crazy and I was sure Scott's father knew it. "Why do I have the feeling that he is taking advantage of my weary spirit? It almost feels like he might be actually reveling in it," I lamented to a friend. "What would make him turn so cruel? I feel like a pawn in a vengeful chess game and I don't even know why."

During those first days of wandering around the now-empty house, my thoughts once again turned to making a living. My attorney bills were mounting up at the same staggering rate that my bank account was shrinking. Except for a couple of brief stints in a multi-person office situation, I'd always worked from my home. It had been a perfect fit for me as a single mom. Being home when my kids returned from school was important, and I was lucky enough to have been able to make it work for us. Now it seemed like a good time to explore some bigger storefront office opportunities.

The visits to Scott had become weekly. It was still very difficult to leave him and drive away. If he were in college, I kept telling myself, he would be away from home, too. As sad as it was, this was his new life. I had to let go.

Thursdays seemed to work best for me as a weekly visiting day. I would drive up in the early afternoon, before the infamous L.A./Orange County rush hour hit. We spent our time together reading and walking, and I fed him his pureed dinner. He actually ate quite a variety of mushy stuff. On my way to see him, I always stopped at Baskin-Robbins to buy him his favorite mint chocolate chip ice cream. Avocados were another favorite food, so I would mash one up and give him that, too. I wasn't sure he tasted anything, but I imagined him enjoying it anyway. Liquids and meds were still given through a feeding tube into his stomach.

If I called ahead of time, the staff would have him up in his wheelchair when I arrived, and I would take him outside. Pushing him along the crowded city streets was quite an adventure.

About three blocks away from his residence, there was an overpass bridge across a very busy freeway. As I pushed him out on it the first time, we could feel the rumbling and rocking of all the vehicles pulsing along underneath us. The pleasure Scott derived was apparent as his eyes got wide. He seemed very cognizant in those moments listening to the throb of the city. It became a popular destination for us country mice.

His roommate was a 25-year-old man from Nigeria. He was a character! Many male head-injury victims lose their inhibitions and discretion. Families often find their previously polite and mindful loved ones groping the nurses and spewing suggestive language and remarks after their accidents. It is usually just a stage the patients go through. Scott's roommate was in that stage. It's a good thing that he couldn't move, because he would have been chasing me all over the room. As it was, he just verbally propositioned me constantly, and quite charmingly I might add. He had no family in the United States. He had been a student here when he had a car accident. His family at home had no money for travel or medical expenses, so it was the obligation of our government to care for him the best they could. It was hard to see much of a future for him.

Staying in my home became impossible. Instead of selling the new house I was building, I decided to move into it. It was a beautiful lot with a view on a dirt road that led to miles and miles of back country, and there was room for my horse.

Several months after Scott's accident, my neighbor, who was an Arabian horse breeder and the father of my daughter's good friend, decided I needed a distraction from all the sorrow. He had a new colt that he was not going to keep in his herd. He practically gave him to me. This little guy brought me much joy and did a lot to keep me grounded and sane. Every day, he needed to be worked with, fed, watered, etc. He was a reason for me to get up in the morning. Horses provide the quickest way to lose the blues, an escape like no other. Scott was a horse lover, too. He loved it when we'd be outside and I would bring my sweet "pony man" clomping over to his wheelchair for a visit.

I sorrowfully packed up what I didn't sell or give away and moved with my critters to the new house. Renting out my former house couldn't have worked out better. I'd been worried that all the construction modifications for Scott would limit the market for the house. When a couple answered my ad, asking me if I thought it would be suitable for a group home, I answered that it would be wonderful. It was legal in California to have an unlicensed group home for six residents or fewer. The couple who called took care of four men and two women who were older, but not invalids. When they viewed the house and set up, they immediately loved it and started making plans to resurrect the vegetable garden. Knowing what meaningful use would be made of my little dream house made my heart swell. In real-estate lingo, it really was the "highest and best use" for that property.

Thursdays had become my favorite day of the week because I would see Scott. Our assigned social worker and I met often. Although he was only twenty-three years old, just five years older than Scott, he was skilled and comforting. He was easy to talk to and very compassionate. "I want you to know, Carol, you can always count on me to be there for you and Scott," he assured me. "Day or night you can call me on the phone for any reason." He promised that his commitment to us went beyond the hospital. Wow! I finally had a real advocate and that felt very good.

The real estate office where I chose to join up and hang my license was a fairly large one. The owners were two women, a bit younger than I was, who loved what they did and were fun. FUN. I really needed a gigantic overflowing overdose of FUN.

On one of my visits to Scott's, the staff asked if he and his roommate would like to be moved to a four-bed ward. There were two other coma patients already there. I thought it was a good idea. The next time I visited him, I knew it had been the right decision. Scott was always happiest in a group. The four of them now shared a big bright airy room with lots of windows and space for chairs and couches for visiting. The man from Nigeria liked it a lot and told me not to worry about Scott, he was going to take good care of all his "coma boys".

Halloween arrived. At the office, we all dressed up and the day was pretty much partied away. It had been a very long time since I'd done anything like that. But as soon as it was over, I started to dread the inevitability of the pall that would descend on me while the rest of the world glided gracefully into the tra-la-la of the holidays. I hoped that maybe this year would be different, and it was, a bit.

Living alone in a house after sharing one with a hospital wing for the last two and a half years was freeing. I was able to start entertaining again, and was able to host the annual turkey pig-out with my old gang. My daughter and her boyfriend joined us and it "almost" felt like old times. I even started dating a bit.

After surviving Thanksgiving with some joy, Christmas was quickly coming up.

Now that winter had arrived, Scott and I weren't able to spend as much time outdoors cruising. We spent more of our few weekly hours together reading indoors. I usually wheeled him to a quiet spot out of his room, because a television was usually blaring and I didn't want to bother his roommates. On one visit, I asked our Nigerian friend, who was getting calmer and more coherent all the time, if he would enjoy listening to a story, too. He said he would, so we turned the television off and I read loud enough for all the boys to hear. The first book we tackled was Treasure Island, a good rollicking "guy" story. I'd always loved a good pirate adventure, too.

My Christmas present to myself was spending my least favorite holiday in Hawaii. Just the thought of escaping to my brother's in the paradise of Kona and getting acquainted with my three-year-old niece helped me to breathe deeper. A respite spent snorkeling in the crystal-clear waters and lying like a blob on the beach under the shade of a kiawe tree seemed like heaven, a long way from my real world.

YEAR #5 1986

With the holidays successfully behind me, I found myself breathing a bit more deeply and slowly. In January, I made an amazing sale that had me feeling very optimistic about the days ahead. A beautiful ten-acre parcel in my own neighborhood came on the market, and an offer to buy it was made by a company that set up small facilities for people with head injuries. This was too perfect to believe. Their intent was to have a facility up and running within two years. What was the chance of something like that happening? Their good intentions had to overcome a few hurdles, however. There was no recorded access to this property. There was a road to it, but somehow years ago when the huge parcels had been chopped into smaller ones, someone had forgotten to reserve access for this particular parcel. So I was on a new quest, one that concerned me personally. If the dream of Scott in this facility were to come true, it would be up to me as the buyer's broker to obtain a legal easement from all the other property owners on the existing road. This was not a quick and easy thing to accomplish.

Finally, the helicopter liability case was settled. The amount of money we walked away with, while not all that large, gave me some measure of relief. If the insurance company figured out a way to wiggle out of their obligation or if Scott's father's company dropped his policy, at least we would have a small cushion and some options.

The dream of closing on the property that could become a close long-term place for Scott to live was fading. We were fighting an uphill battle. It was profoundly disappointing to talk to the neighbors whose support was needed to grant access. When they found out the intended use for the property, they closed their minds and adopted a NIMBY attitude: NOT IN MY BACKYARD. Try as I might, it was impossible to convince them that these folks would not be a risk to the peaceful neighborhood. Around that time, I happened to read a quote from Gandhi: "Opposing numbers are immaterial when the cause is just." It was a great thought, but my buyers decided to look elsewhere. They rightly felt that they didn't want to start a big neighborhood war. Although they could have pursued some legal options, they let it go.

I was gravely disappointed, and I shared my feelings with Scott's social worker when we had our next visit. He was very supportive and confided a dream he had. "It's so interesting that you brought the subject up about small family homes," he exclaimed, "especially today. This facility's director and I like the idea of starting a company that does that. We feel that small family homes tailored to the needs of brain-damaged patients is an idea whose time has come." So maybe the forces were with us after all. I knew that I shouldn't get too excited, but I immediately shared the news with Scott while we took our city walk. In our one-way conversation, I explained it all and told him how happy it would make us both. I was flying so high that it seemed right to celebrate, albeit prematurely. We kept walking until we came to an upscale restaurant. Without thinking further, I opened the door, pushed him in, asked for a table, and ordered a glass of wine. At first, I felt a bit self-conscious, but the staff was friendly and welcoming. Because Scott's injury was to the back of his head, and that part was pretty much covered by the device that supported his head, he was still very handsome and pretty normal looking. He just couldn't move, speak, or see. But he could hear and smell, and I could imagine that the cacophony of sounds, from people's voices in the background and soft music playing to dishes clattering, would be stimulating. I hoped all the scrumptious food aromas pleased him as well. I could only guess about those things. I enjoyed a delicious seafood dinner and he had ice cream.

The divorce settlement debacle came to a head when I had to give a deposition. Merely the thought of having to spend time in the same room as that worm tied my stomach in knots. I wondered what Scott thought of the father he had been so devoted to not having come to see him in over a year.

My memories of that meeting were mainly some version of wondering how I had ever been happily married to a man I didn't even know anymore, and what would make him turn his back on us like this after everything we had done together, including raise a child. It was so incomprehensible that it evoked a rage I had never known was inside me. At the first meeting, he looked so awful and smug that it was all I could do not to leap across the table and scratch his eyes out. And it wasn't over. There were two more settlement hearings before I agreed to take what was still clearly a rip-off and be done. I just wanted it over. At that point, I felt that if I never saw him again it would be too soon.

Escape was my reliable rescue resource. A wonderful life-long city friend and I decided to take a trip to a place where I had left a huge part of my heart.

Cedar Grove is a favorite area of mine, located in Kings Canyon National Park, in a very dramatic part of the Sierras. Many fond memories from trips as a youth, honeymooning, and then sharing with my own children flooded over me as we drove through the park entrance. It filled me with nostalgia, longing, and peace.

This trip was a different experience, and not only because I wasn't with my family. This time we didn't camp in a tent or sleep on the ground. My friend was a city mouse and while she appreciated the beauty of the mountains, she also was used to sleeping in a soft bed under a real roof. We went lodge camping. It was years since I had been to Cedar Grove, and among the changes was a new lodge that the park service had created for tenderfeet. So while we hiked a lot of the old familiar trails, took in the campfire singalong, and threw stones in the river during the day, at night we ate in the dining room and slept on cozy mattresses. We also stayed up talking into the wee hours both nights we were there, slept in late, and had champagne brunches. It was wonderful: the perfect rejuvenation injection.

My life had turned into a roller coaster ride with constant ups and downs. I found myself incredibly depressed for no particular reason after one of my visits to Scott. We'd been going through hell for so long that I was exhausted. Pacing myself for whatever long haul was in front of us was an exercise in futility given the big unpredictability of it all. I rationalized that another escape would be just the ticket to pull me out of my sadness. My daughter and I hadn't spent much time together lately, and I thought a trip might bring some bonding and healing. Her mourning for Scott was not like mine, but she did suffer. I pictured us in the mountains together on a five-day whitewater rafting trip down the Yosemite River. But it was not to be. Days before the trip, she called to tell me she was pregnant. Of course, going on a trip in the wilderness with Class 4 rapids was out of the question for her, so I went alone.

In any "normal" situation, whatever that was, I would have been happy, but I wasn't because it wasn't. Her own grief and loss seemed to have dragged her down into the relief of the bottle and she had made some bad choices. "What are you thinking, bringing a fatherless child into the world?" I blurted out undiplomatically.

"I'm happy about it, Mom. I want a baby, and I want you to be happy for me," she answered. That was a tall order. I was going to be a grandmother, ready or not. Holy crap. Scott would have loved being an uncle. He was always urging me to have another child. He would have been in his finest hour.

In September, a friend encouraged me to join her on a trip to the World's Fair in Vancouver, B.C. I'd had a good summer in my new real estate office. The bonus of having a support staff to cover for me while traveling was a stress reliever in itself. I decided to go.

My friend was a top-notch traveler. We rented a room in the city only a bus trip away from the festivities. It was a magical experience. This was a WORLD'S fair, and I got a glimpse of how all the different peoples of the world could come together in a positive way. We were all there for fun, adventure, and education, which is always a great mix of endeavors. Even though we were packed in shoulder to shoulder much of the time, everyone was so polite and helpful. It really gave me hope for long-term world tolerance possibilities.

The fair was a five-day exploration of the theme of transportation, a subject dear to Scott's heart. Scott was a transportation kind of guy. Even though he was only fourteen when he had his accident, he'd been flying in helicopters and airplanes since infancy, had his own motorcycle at age eight, was driving trucks and cars at age ten, and had earned pocket money from plowing up fields for neighbors with the tractor when he was twelve years old.

After a week of traveling together in Vancouver, my friend left for home. My favorite form of transportation is the train, and I departed on an adventure north to Banff, Alberta, on tracks that wound through the breathtaking splendor of the Canadian Rockies dotted with glacier-fed lakes and towering jagged peaks. I'd traveled frequently by train, both alone and with my children. I think that the forced tranquility of a train is what is so appealing to me. I loved the anonymity of traveling alone. I was able to be just whoever I was at that moment in time. In Banff, I hooked up with my Canadian brother. He was fresh off a tree planting contract in the interior, and together we shared a happy and leisurely five-day road trip back to his house in Victoria. Then I flew home to face the real world once more.

Scott's father still hadn't been to see him or called about him, even when I was away and Scott had no other visitors. It broke my heart and it made me feel stupid. How could I ever have thought he loved us? He couldn't have. No one could change that much. And yet I surely had loved him madly for a long time, and our first few years had been filled with lots of adventures and passionate nights.

When Scott was only two months old, we had moved to rural Iowa for his father's first paid flying job. Sometimes on Sundays, we left my daughter with the neighbor and flew off in the two-person helicopter, with me holding Scott in my arms, and went barnstorming. There were many small county fairs held in neighboring towns and we'd fly around until we found one. Scott's father would circle above the fair for several minutes, getting lower and lower. Finally we'd come to a gentle landing on a nearby vacant lot where the crowds had already started lining up for rides. Scott and I were the ticket takers. For five dollars, one person at a time would get a ten-minute ride. The flight always included a nice long look at their own farms from on high, and when they emerged from the helicopter at the end of the tour they would have grins on their faces from ear to ear. Some of these old OshKosh Scandinavian farmers had lived in the same house since birth, spending their whole lives tilling the same soil as their parents and grandparents had. A small farmer's life left little money for travel to glamorous places. We were the biggest excitement and thrill many of them had experienced in a long time, and it was a hoot to be a part of it.

The first few flying jobs for us meant lots of moving. I loved our lifestyle in those early years. When we finally settled into a less adventurous, more permanent lifestyle, it seemed like whatever magic our relationship had had began to dwindle, and the rest is history as they say. But I had adored him once upon a time, and I look fondly on that other life. I guess there are no happy endings. Maybe I watched too much Ozzie and Harriet as a kid and let my expectations get too high. In any event, it was over and now it was time to move on. At least it was time to try.

The year ended with a Christmas visit from my Hawaii brother, his wife and daughter, and our father, which was a shock because our secret nickname for him was Scrooge. He wasn't a holiday guy. If my mother hadn't reminded him that it was time to buy a tree, we would never have had one. My Hawaii brother was the only one of my relatives that always visited Scott when he came to the mainland. He had lived with us when Scott was a baby, after our mother died. He and Scott had been close, and he felt the loss deeply. Other than my brother, no other family member even spoke Scott's name during the whole multi-day reunion. Still it was an important reunion for our small, far-flung family.
YEAR #6 1987

It was the time of year to make resolutions and new beginnings. The goal of getting Scott into a small family living situation was closer. The administrator of his current home called to ask if I would stop in to see him the next time I visited Scott. When I did, it was good news. "Carol," he said with excitement in his eyes, "we're moving forward with our plan to start a chain of small family homes for the brain injured. Our new corporation has just purchased a nearby house to be the prototype. We'd like to have Scott be our first resident. How do you feel about that?" I replied that it was a dream come true. I hoped that I wouldn't start crying. As if that weren't great enough, the administrator went on to promise, "If this first home is successful, it is my commitment to you that the next house we buy will be closer to where you live." I was overjoyed. Here was a compassionate man of action. Silently, I awarded him "my new hero" badge.

I was excited by the thought of not having to make the four-hour round-trip weekly journey on a bumper-to-bumper freeway. The city mice could have it. I was glad to be a country girl. I could feel a bit of peace begin to wash over me, a state that had become very infrequent, but was ever so welcome when it came.

It turned out that I was dead wrong in my naïve assumption that the insurance premiums would go down now that the company was paying out less since Scott had moved to a group home. The latest notice advised us of an almost fifty percent increase.

The five-year accident anniversary came and went. I had never dreamed that Scott would neither be better nor have succumbed to his injuries after all this time. If I expected that the past could predict the future, it gave me the most depressing and sorrowful feeling that could be imagined. So far my own body had held up, thanks to my youth I was sure, but now it felt like I was aging at an ever-accelerating rate.

During my most recent check-up, the doctor diagnosed my constant sweats and other weird symptoms as menopause. "WHAT?" I squeaked, "how can that be? I am only forty-one years old." He asked if I had experienced a lot of stress lately. With a sense of impending old age, which brought even more depression, I filled the hormone prescription. I had to have some relief from the hot currents that started in my torso and traveled upwards until my face was beet red and sweat was pouring off of me. The worst part of this accelerated aging was that my mind would get scrambled. I couldn't complete a thought process and often felt faint. These surges came at all hours of the day and night, making it hard to escape into the sleep I so desperately needed to function during the day. All of a sudden, I was feeling like a grandmother. Any remedy for sleeplessness was something I embraced.

Good fortune had not totally abandoned us. A beautiful new male addition to the family was born on the luckiest day of the year, St. Patrick's Day. Surely this was a sign of the tides turning. A wee bit of joy after all the grief? Thanks, I'll take it. Because this new addition was fatherless, I was the one who got to hold him first. It was a premier moment, one of renewal and hope, and for that moment in time, one of ultimate bliss.

The new house that I had built and was living in finally sold. I gave my sweet "pony man" to a friend for a while and moved into an apartment above a barn that belonged to another dear friend. The one-room living concept turned out to be quite cozy and comforting. There were lots of windows for light and soothing country views of oak trees and gardens.

It was lambing season and so far six had been born. Their quarters were right behind mine, and we shared the barnyard. When they were first born, they were the sweetest little creatures, but they quickly grew into a noisy flock that demanded breakfast at about six a.m. every morning. To get any sleep after that hour, I learned to plan ahead the night before by putting a quantity of hay on the ground just outside their reach. When the morning bleating started, I would stagger down the stairs, eyes only half open, kick the hay into the enclosure, and then trudge back upstairs and jump back in my snuggly bed without totally waking up. Ah, the country life.

My dear girlfriend from the beach days had been encouraging me to go to Europe with her. It was a spontaneous decision to accept. I rationalized the expense as another very much needed sanity escape. This would be my longest one, a full month. Destination-wise, it was pretty much unplanned. We had tickets to London and a thirty day EuRail Pass. We traveled very light. Geography had never been my strong suit so I checked my expectations at the boarding gate. It was the most carefree month of my life. Every day brought a new adventure. Whatever time we got to the train station, we would look at the departure schedule and take the next train that left.

Train stations in Europe were like mini-cities where you could buy almost anything. At each station, we would stock up on food and wine and be off again. It was divine.

When the party was over, I returned to find Scott unchanged and his new home a month away from completion. Before I left, we had been reading All Creatures Great and Small. I would have to pick up the pace to get it finished it by moving day. I was going to miss Scott's group of roommates, especially the Nigerian who never failed to put a smile on my face and give me an ego-boosting compliment. He had been a very good and caring friend to Scott and all his coma boys.

We would miss the adventures with all the noises, smells, and bumps along the sidewalks. Pushing his cumbersome wheelchair to get across the wide boulevards before a traffic light changed was always a challenge. There was a lot of excitement on our city excursions.

On the last visit I made with Scott before his moving date, we had a startling encounter. I was pushing him along on the sidewalk next to a whizzing four-lane thoroughfare, when out of the corner of my eye I saw a car on the opposite side pull over abruptly. A large black man jumped out and made his way towards us, dodging and weaving through the heavy traffic. My first thought when I saw him coming our way was one of fear, although I told myself that surely nobody would attack a woman pushing a wheelchair in broad daylight.

When the man reached us and caught his breath, he could see I was apprehensive. Calling me sister, he quickly told me that when he saw us he felt compelled to stop his car and offer us his support. He felt he could best convey this support by praying for us. "Would you be open to joining me?" he asked. I was momentarily speechless, but it quickly registered that he was there in peace, and even though I wasn't a person of faith, I agreed. So there we stood in the middle of the sidewalk during rush hour in a circle with all three of us holding hands while this kind man pleaded to his god for Scott's healing and for compassion for us both. Then just as quickly as he came over, he navigated back through all the cars, smiled, waved and drove away.

It was a very moving moment, one I have long remembered. After five years of painful struggling with our fate, I'd come to realize and very much appreciate that while we may not have gotten the support we had expected from those closest to us, we often were the recipients of kindness from a new friend or even a total stranger.

Moving day was stressful for us. The newly renovated group home was in a fairly exclusive residential neighborhood. While it was quiet and well located, there were no sidewalks. That would severely restrict our outdoor cruising. I had come to quite enjoy our city traipsing over the last couple of years, but it wouldn't be possible now.

Inside it was very pleasant and welcoming with a large open room that offered a television, books, and comfy furniture. There were three spacious bedrooms, each large enough to accommodate two residents and all of their related equipment easily. I liked it. There was more of a family feel to this new home. Especially reassuring was that the nurse administrator lived there in a guest wing with her one-year-old son. Still, once again it was hard to leave Scott there with more strangers he didn't know, and who didn't yet know him.

On my first visit there after moving him, I was relieved to see how well he'd settled in. We still read, of course, and he laughed and smiled at the antics of the Hardy Boys. We went strolling outside into the blooming gardens.

When I left that day, I lost it. There was nothing in particular that caused the meltdown, just the ongoing pain that sometimes I could keep simmering below, and then at other times couldn't. It was something I could never predict. Sometimes after seeing the non-functioning body of my beautiful twenty-year-old son, I would tip over and it all would come pouring out. I hated to cry and drive, but I couldn't hold it in. I sobbed the whole way home and long into the night before my tired old body finally drifted into the relief that slumber brought.

After over five years, sometimes I would wake up in the morning after crying myself to sleep, and for the first few moments lying there, spent from the night before, I would actually forget everything bad that had happened. Then reality would kick in, and once again I knew there was no choice but to summon up the energy to get out of bed and keep on keeping on.

When I learned of my impending grandmotherhood, there were a lot reasons that I was not overjoyed. Then there was the grandma label and the associations that came with the label: at forty-two, I felt too young to be lumped into the gray-haired old lady category. But my grandson was here, and he had to call me something. After mulling it over, I decided on TuTu, which is the Hawaiian word for grandmother. Since I had one brother living in the islands and my mother had lived and died there, it seemed like a good option.

Interestingly, I found I spent time with my five-month-old grandson pretty much the same way I did with Scott. We read, we ate, and I pushed him around in his stroller.

On one of my weekly Thursday trips to visit Scott, I got courageous. I packed up the baby supplies and strapped my sweet bundle in his car seat, and we hit the road to meet his uncle. Scott's eyes got big when I held the baby up to his cheek, and the look on his face became very quizzical. That day we read our first Dr. Seuss book together. I chose Horton Hears a Who, always a favorite that was guaranteed to make Scott laugh out loud.

There was nothing like a dose of the Sierras to put me in touch with myself. A respite in July took me on a llama trekking adventure. For five glorious days, I could just be myself. No phones, no bad news, no crises. Llamas are curious creatures, something like a cross between a camel and a mule, but smaller. Seven of them carried our gear in a very precise way, and each of the eleven of us trekkers took turns leading on the trail. Each bend in the path brought another breathtaking vista.

I arrived home with a blissed-out feeling and the knowledge that the mountains would always be there, but if I was ever going to realize my lifetime goal of living there full time, I would have to get serious. I would need to have a plan and put my nose to the grindstone.

In the fall, I decided to leave my nest in the barn and the sweet community that I had grown to love. I had moved there from the beach thirteen years before with my then-intact family, and while I had lots of good memories, it would be a relief to leave behind the horrible ones. Returning to the coast appealed to me, and it would actually be a bit closer to Scott. Scott's grandmother had met me at his home on my last visit and I could gradually feel us growing closer. He had been the light of both of our lives and no one else in the world could even begin to understand the pain I felt except maybe for her. We had both brought his favorite gourmet ice cream for dessert; he was certainly pampered that day. She somehow was under the impression that Scott's father still saw him regularly, and I just didn't have the heart to tell her otherwise. Imagine having such an ass for a son!

On a whim, I answered an ad in the paper about a room for rent in a swanky condo that overlooked the beach. The next thing I knew, I was writing a deposit check. In short order I moved into a 10 x 11 room with French doors opening onto a private balcony affording a sunset view over the ocean that was nothing short of heaven.

Having a roommate was a first for me. She was a professional singer who also gave voice lessons in the downstairs garage that she had converted into a recording studio. The only furniture in our living room was a ping-pong table. This was going to be interesting.

A man I was dating then had been urging me to attend a five-day personal growth seminar. Because I was a seeker, mainly of pain relief, I signed up. I certainly learned a lot from it, particularly that no matter how much I pretended to be an ordinary gal, I was only trying to fool myself. I had a son who had been in a coma-like state for almost six years. It set me apart, it was hard to relate to, it unkindled fires. When I heard others complaining about their normal lives, it made want to scream. Maybe that was pretty intolerant of me, but all I wanted was a normal life.

Living in my new whitewater view space gave a new definition to downsizing. After arranging my new futon bed, a desk, and a small entertainment cabinet in my mini-room, there was only about eighteen square feet left to lie down to do yoga, about the size of a coffin. It did feel freeing to have so little to take care of at that time, but it also felt strange that for the first time in twenty years I was without a dog or cat.

A colorful group of characters had presented themselves to me since I'd taken up occupancy with the musical diva. My friends who visited thought it quite wondrous that my roommate and her girlfriend could play such a hot game of ping pong wearing mini-skirts and spiked high heels.

I thought that the holidays came and went a little bit easier that year. I only fell apart for one day.
YEAR #7 1988

It was an unusually cold winter and my whole flower crop froze. The thermometer dipped down into the 20s for several nights in a row, which was rare. I had already been thinking of selling that property and looking for a bit of land somewhere else to build again. At that point I knew I needed to be gone forever from my former farming town. It was a relief not to see Scott's father's car on the same road almost daily, and trying to manage the flower farming aspects had been made harder since I had rented the house out. Our former dream house needed to be sold. Before that could occur it would require a lot of renovation. I had my work cut out for me.

Scott still had no roommate at the new group home. The capacity was six residents and they had five. In a way, it was nice for Scott and his infrequent visitors to have the whole room to themselves, but I was worried that it was a little too quiet for him to be in a room alone most of the time. One thing I liked about the small home situation was that the staff varied less. In a 40-100 bed facility, there were larger numbers of caregivers rotating around. Because Scott was blind, it took him longer to familiarize himself with someone new, especially if they were not talkative. I tried to emphasize to everyone the importance of talking to him constantly while they took care of him. "It would be disturbing and startling for him to be flopped around without first being told what was going to happen," I explained to them. With the smaller living situation, there were only about twenty full and part timers, including the cooks and cleaning staff, which made it easier for everyone to get acquainted and for them to take the extra time and energy to attend to their fewer patient's needs. Scott's wonderful social worker from the last facility still came to see both him and me at this new one. Despite his rather depressing vocational field, he was a very outgoing, creative, and fun man, and he always had great stories to tell. Scott didn't hear many male voices, and I could see him listening intently to his former social worker's rollicking tales.

One afternoon walking to the post office after work I was blindsided again. It was the six-year anniversary week of Scott's accident. A letter from his father's company informed me that they intended to dissolve the corporation, which meant the insurance coverage would disappear. I had been paying the lion's share of the premiums for a long while. This news was shocking. What about Scott? What would be the chance of us obtaining another unlimited policy for any premium amount if we were left on our own? The fury that I experienced walking home was nothing short of homicidal. Were they totally insane? Had all the pesticides they'd inhaled for all those years warped their minds to the extent that they could actually live with the decision to abandon us completely? I could feel the terror, fear, and utter despair creeping in. ENOUGH, my mind screamed. Not another slimy attorney to deal with, please.

My forty-third birthday came, and with it the dread of seeing Scott turning twenty-one just five days later. Officially, his adult life should have been just beginning, but here I was trying to come to grips with him never having any life, period. What a journey these last six years had been for us. My worst fear, even before his accident, was that he would die or that I would somehow lose him. I loved him so much, and I tried not to worry all the time about that terrible prospect. Even after his accident, I refused to believe that he wouldn't recover. Now, six years later, I still had hope, though my highest expectation was to somehow establish communication. Even moving one finger would bring me such joy. I wasn't giving up, because I truly believed that Scott had a level of awareness that was hard to judge and impossible to measure. What kind of a man would he be now if his life hadn't been destroyed? At age twenty-one I saw him out of college, handsome and hardworking. I held that vision even though I'd forgotten the sound of his voice.

One night while dining with old friends from my happily married days, I found myself falling into my now-standard refrain of ripping on Scott's father for being such a jerk. Later, in thinking about my diatribe, I realized that his behavior had raised me into a kind of sainthood. To be honest, anyone would look like a saint in contrast to him. I truly wished he would just vanish off the face of the earth, which was not a very nice thought for a saint to have.

To prevent the helicopter company from dissolving their corporation, I had to hire another attorney. The new one told me he could help if I gave him a five thousand dollar retainer, which of course had to come out of Scott's meager emergency fund.

My grandson had his first birthday. The joy of watching a new generation coming along made me want to work harder on keeping myself in a positive place. Lately I had taken my daily walks with a headset on, marching down the street listening to tapes of happiness affirmations and visualizations, with the hope of reprogramming my poor grief-stricken and stressed-out brain. I didn't want to be so down all the time; I wanted to feel normal again.

My new attorney was confident that the mere act of writing a letter to the helicopter company would be enough to encourage them to do the right thing and keep the corporation intact. But those slimebags knew no shame. It eventually took the threat of a court date to get them to agree, which of course drained the "in case of" fund even more. In the end, I signed an agreement to keep on paying the full amount of whatever the premiums rose to, and they agreed not to go belly up.

Scott finally got a new roommate. He was a few years older than Scott. A few years before, he had fallen off of a roof at work. He was badly brain injured like Scott, with a lot of damage to his face, and was totally non-responsive as well. He did make loud sounds, mainly screams and wails. I didn't know if bothered Scott or not, but it did bother me. I was always anxious to get us outside as soon as I arrived. Reading quietly to the two of them together in their room was not an option.

As the weather warmed up, we enjoyed eating al fresco in the beautiful and lush backyard garden. On one visit, Scott's grandmother met me there. She asked one of the nurses if she had seen Scott's father lately. The nurse replied that she had not. I could stand it no longer. "Scott's father has not been present in his life for over two years," I tried to say gently. "He doesn't call to ask about him either. I'm really sorry to tell you this, but it's what we've been dealing with. It makes the pain and grief even deeper for me and I don't understand why he has abandoned us like this." She was dumbstruck. We spoke very little after that and she left as soon as we were done with dinner.

Sometimes the planets aligned and life was still good. No sooner did my flower farm house sell, giving me a bit of cash to buy a new lot, than the perfect next project fell into my lap. That was a happy interlude. I had listed a lot with a beautiful view next to a several-thousand-acre agricultural space, but it wasn't selling because of the steep slope. I bought it. The thought of starting from scratch again was energizing. This would be my biggest building undertaking to date, would satisfy my creative appetite, and would put me one step closer to my dream of mountain living from the profit I would make when it sold. It felt good to have a positive goal again.

My days were filled with plans, office work, and an occasional social function except on Thursdays. My grandson was running around by this time and loved going to see Scott with me. The administrator's son and he were about the same age and together they had a blast racing around the halls pushing wheelchairs, squealing with delight and occasionally crashing into each other. Scott loved going fast, and crashing into things was right up his alley. When his nephew's vehicle would collide with his friend's, it would send Scott into gales of hysterical laughter, and subsequently the little boys, too. Their joyful sounds made my heart soar.

Another premium increase came in the mail. It was certainly not unexpected, but it made me wonder how much higher it would go. The question of how long this game could go on was very disconcerting and never far from my mind.

As fall came, I continued to concentrate on my new house-to-be on the hill. It was a race to get the footings and foundations for the retaining walls poured before the winter rains. Because of the degree of the slope, the foundation design had to be engineered. The costs were staggering, but in the end this new structure would easily take a ten on the Richter scale and never budge an inch.

The dreaded holidays came and went. I was still standing, which had become the best I could hope for.
YEAR #8 1989

My life was full time wise, but I was still carrying around a huge sack of nothingness. I decided to start seeing a therapist. Maybe therapy could help me figure out how to fill that void.

On February 20, the date that delineated "before" and "after", my heart was so heavy that I couldn't get out of bed. It had been seven years. It felt like forever. My life had become defined by this date. I often thought about the mother I had met at Elisabeth's workshop whose son had survived seven years. What had happened in their story? Now we were in her survival time frame. Was she still in that mode? I was sorry I hadn't kept in touch.

For my birthday, I got some good news. The owner of Scott's home was ready to purchase another one, and he wanted me to become his real estate broker in locating a suitable candidate in my area. I was going to be in charge! Scott could be mere minutes away from me. My selfish preference was a home in a semi-rural location. The city was fine, but the country life was for us.

Months before, I had acquiesced to Scott's father's helicopter company's threats. Once again, I caved and agreed to pay the total premium on the insurance policy so they would keep it in force. My current smarmy attorney had billed me thousands of dollars to basically write two letters. My objection to his outrageous fee ended at an "arbitration" hearing. Add him to the long and growing list of entities who felt totally comfortable pilfering Scott's meager estate. Arbitration was a joke. The lawyers sitting in judgment of this attorney's fees were his golf buddies. The fees were not reduced one dime. Talk about foxes and henhouses.

When walking out of the arbitration hearing, I could feel myself start to drift into a state of total incomprehension and helplessness. By the time I arrived at my office, with the ridiculous notion I could actually get any work done, I was trembling noticeably. Walking in the door, I could tell right away something was very wrong. The son of one of our officemates had died in a car accident earlier that day. It tipped me over and I completely lost it. I hadn't had that big of a breakdown, especially not in front of others, in a very long time. It is scary when I get that out there. Sometimes when I want to cry, I can't and then when I don't want to, I do. I could almost hear Elisabeth saying, "Yes, yes, of course, everyone needs to let go." Well, I did...whew. Just hearing about the loss of a child was too much for me.

My shrink thought an anti-depressant would be a good idea for a while, a crutch just for now. She was certain my low energy and achy joints, not to mention my state of mind, could be helped. I was willing to try anything, so I filled the prescription. I couldn't afford to run out of energy. I had a house to find.

And I found one. It was a one-level sprawling ranch house snuggled into a two-acre grove of assorted fruit trees. After a remodel, it would be ready for occupancy by the end of June.

When you are a conservator of someone's estate and life, you must make an annual accounting of every dime spent and every decision made. Before the insurance company dispersed any funds for Scott's settlement, I had to hire yet another attorney. He specialized in estate law, and saw I was appointed as Scott's conservator by the courts. This time I had lucked out and found a lawyer with a heart. Every time we met, the discussion would bring tears to his eyes. Really? An attorney that gave a damn? He did everything he could to make things easier on me, but I still had to be accountable. I found myself up to my eyeballs sorting out all the expenditures, conditions, and reports. Paperwork had always been my weak suit, a task I had never excelled at. This job was made worse because every page reminded me of the endless heartache that seemed to engulf my whole life.

Each time I visited Scott, I was never quite sure how I was going to handle it. If I was already stressed out, it was pretty predictable, but even when I thought I was doing OK, it would only take one small thing to send me into a dive. Meanwhile, my daughter wasn't making any progress in her fight against alcoholism. She was on very shaky ground and was taking her son down a bad path with her. Every time the phone rang late at night, I was gripped with fear of dire news about either her or Scott.

On hot summer Thursdays, I got in the habit of taking my grandson with me to see Scott. He was three now, and still enjoyed playing with the administrator's son. The grassy yard beckoned us and Scott could at least hear the little voices of delight as we sat under the shady trees. We both savored listening to every squeal as the two little boys ran through the sprinklers and scooted down the Slip and Slide. I hoped it brought Scott some pleasure.

My grandson watched me feed Scott his goo many times and had decided he wanted to learn to feed him. Each lifting of the spoon was a challenge. Aiming at his mouth and coaxing it to open was another skill, and then getting it swallowed before it could be spit out again was quite another. What a mess. I started laughing and so did Scott; my grandson started to pout. When he realized we were laughing at the whole situation, not just him, he started laughing, too. It was a memorable generational moment.

Scott and his roofer roommate, who had quieted down considerably, were settling in. I thought maybe the roofer was scared by being in a new place. He still startled easily, but he and Scott seemed like a good fit. One of the nurses told me that sometimes she thought they communicated with their moans and wails. If I could have known that to be true, it would have brought me inestimable joy.

As feared, Scott's insurance premium jumped up another $400 per month. It didn't take a mathematical genius to figure out that with the current rates on certificates of deposit we weren't making enough interest on the principle each year to make the premiums. Each month I wrote the check, there was less to draw interest on for the next one. Sometimes I woke up in the middle of the night with my heart pounding with fear.

As late fall approached, the remodel of Scott's new home was on schedule. We would be able to move him in time for the holidays. More good news came: Scott's roofer roommate would be transferring to the new home, too. It would ease the transition for both of them to continue to be buddies.

The director of their new home was a lively forty-something R.N. who was married without children who had the energy to invest in what that position required. She wouldn't be living there full time, but she only had a short commute from the next small town. I hadn't met the rest of the staff. I looked forward to kissing that four-hour weekly trip goodbye.

I would miss a nice monthly ritual that had developed with my dear lodge camping friend, who lived in L.A. On the first Thursday of the month, I didn't eat at Scott's home with him. Instead, my friend and I met halfway at a great sushi bar, where we spent the evening dining elegantly and catching up on a month's worth of gossip before I headed on down the road again.

In November, a friend and I escaped to Alberta, Canada. We then followed the road to Victoria, British Columbia, including two ferry boat rides to the remote Cortes Island, home of my hippie brother. Our accommodations on that trip varied from the five-star Banff Springs Hotel to a double bed in the back of a retired old van parked on a swampy but fertile plot of land a scant block from the ocean. It was a quite an adventure and a great respite.

Scott and his roommate were transferred just before Christmas by an ambulance van to their new, and I hoped last, home. It was a red letter day for me to have him this close again. I loved this parcel of paradise that hosted at least one of every kind of fruit tree seemingly known to man. The plan for future development included wheelchair paths through the lush fragrant branches, with benches for resting placed strategically along the way. Not only was this location convenient for me, but his old favorite night nurse could now make more frequent visits along with her poodle. Dogs and cats were most welcome at this new home.

There were two other men in residence when we arrived, both a lot older. One had had a very severe stroke and the other a car accident. They both spoke only minimally, but they certainly could get their points across. I found myself envious of that amount of communication. The staff and I looked constantly for any sign from Scott, in even the most basic form.

The holidays found him in his new home, surrounded by most of his loved ones, singing Christmas carols. I was grateful, but....
YEAR #9 1990

It was harder for me that last Christmas. Several years had passed since I had stayed home for the holidays. So I put on my jolly face, but "fake it 'til you make it" only went so far. As usual I pushed through until my circuits overloaded and I took the now-familiar few-day trip down the rabbit hole. Scott's social worker, who thankfully had followed us to this new home, came to the rescue again. "I'm having a really hard time being with Scott on some pretty important occasions," I lamented. "His birthday is the hardest, with Christmas being a close second. My memories of 'before' flood me at those times, and try as I might I can't get them out of my head. I feel so guilty that I can't be there for him at those times, but I just can't."

He answered, "You're his mother and of course you want to be there for Scott totally. But please keep in mind, Carol, that you are not omnipotent. You have to set limits on what you can do or you will be consumed by this whole misfortune." Receiving permission to honor my sanity boundaries was a gift indeed.

Scott's new home was working out well. It felt like a real family atmosphere, complete with a resident dog and cat. The other beds were filled and so it was a home for six. The great room was bright and cheery, like a lobby in a grand hotel. Attached to this room was an industrial-sized open kitchen. Both rooms were anchored together by a large wood-burning stone fireplace. The residents ate their meals together sitting at large round tables that comfortably accommodated everyone's wheelchairs. The staff was a team of positive, lively people who were skilled, caring, and attentive. Families of other residents came and went often, providing Scott with lots of sounds and touches to tune into. Since he was blind, I made a very big deal of asking whoever was caring for him to be sure that he always had something stimulating to listen to during all of his waking hours. All in all, it was a very comfortable place to visit and, I hoped, for him to live in.

My daughter's twenty-seventh birthday was a YIKES moment. It surprised me when she expressed how incredulous she was that she had turned that age. She said she felt old. I took this as a good sign that 1990 was going to be a year of change and good things for her. It just had to be.

Scott turned twenty-three years old this year. Mine was a much bigger number. I had read somewhere that when you turn forty-five, you have officially entered the dreaded middle-age period of your life.

A fellow Pisces friend and I decided to spend our birthdays together. We trailered her horses out to the Anza-Borrego Desert to camp under the full moon for a few nights. Springtime is divine in the desert. Carpets of wildflowers paint the sparse desert floor as far as you can see. The days were warm, the evenings cool and graced by a moon that cast enough light to enjoy late visits around the campfire. The only sounds were of the horses stirring in their corrals or an owl hooting. Ah, finding a way to stay there forever was always a familiar topic of conversation. We spent three days escaping into the back country on our trusty steeds, following dead end canyons filled with the cascading seasonal streams of spring. I returned renewed and recharged. While I was not exactly feeling in a state of "tra la la", I also was hopeful that my life wasn't over with the turning of my birthday calendar page this year.

Having had no crises for a while helped pump me up some, but it seemed like I was always waiting for the other shoe to drop.

My new house under construction was less than five miles from Scott's, and I was spending lots of time between the two places. My new vision was coming together. It was always a thrill to get this far in a building project. It was time to start putting some finishing touches on my new masterpiece. A worker and I had been digging ditches for pipes that would carry the water in the irrigation lines to seedlings we would plant to create a small and fun commercial flower crop. Immediately around the house there would be traditional landscaping of shrubs and trees that would afford me the privacy I so needed. The back deck had a knockout view that overlooked a city-owned "open space" valley that extended from my back yard all the way to the San Diego Wild Animal Park. Miles of quiet walking trails were right out my back door. It would be my sanctuary, my escape, my slice of heaven, and it was still only five minutes from Scott's and Nordstrom's. It felt like a country mouse home merging with a city mouse location. Moving in couldn't come a minute too soon. I was sorely in need of a solid nest from which to operate my chaotic life.

Scott's new wheelchair finally arrived. It was custom-made due to his many limitations, was very high tech, and cost more than a new Harley Davidson. His grandmother and I were most pleased about the new contraption attached to the back of it that held his head up straight and comfortably in place. It was a big improvement over his first chair, which had seen its better days. For the last two years, it had been held together with a combination of duct tape, wires, and odd bolts. It had taken the insurance company over six months to approve the purchase and another four months to build. I expected that the price of the chair alone would be enough to trigger another rate boost.

His new wheels came at a perfect time to do lots of outdoor cruising. All the citrus trees were in bloom. Scott's yard and the entire neighborhood smelled intoxicating. He and I spent almost all of our time together outside, either in the gardens or on the huge shady patio with a view of the whole valley below. Frequently there were outdoor barbecues, and although Scott and most of the residents had to eat their burgers pureed, I was sure they loved the smells brought forth by the charcoal cooking.

On one warm Sunday that first summer, all the families and friends were invited to a grand opening outdoor cookout. My grandson had spent the previous night with me. When it was time to leave for the party, he insisted on wearing a pair of my shoes to the gathering instead of his own. His choice was a pair of size nine bubblegum-pink high-top tennis shoes that had been given to me as a joke. He was the undisputed hit of the party. Scott laughed harder than anyone even though he couldn't see him tripping around. He took his cue from the gales of laughter erupting from the other guests. Scott was loving being an uncle and I loved being a grandmother. This new role had become a very large part of my life. My grandson was my reality check. When it all got to be too much, I would pick him up and bring him home for the night. There we would enjoy the simple pleasures of taking a walk, reading, or just cuddling together. He kept me in the "here and now" and helped to make other pains a bit more bearable.

The local newspaper did a front-page feature article about Scott and his return to the area, complete with photos as well as good information on brain injuries in general. I guess that reading it was what prompted a call from Scott's father to his home asking when visiting hours were. As much as I despised that man, it would mean so much to his son to hear his voice and feel his touch again. I hoped he would suck it up, do the right thing, and visit him.

My father had an emergency that necessitated a spur of the moment, same-day flight to Arizona. After a surgical procedure, he needed me to spend some time caring for him. I was there for a week. Being together was good, even though I felt him artfully dodging around the Scott topic. I really couldn't think of one good reason to bring it up for discussion, so I didn't. When I had tried before, my father would shut down at once. He really didn't want to know. Playing ostrich might not stop all the pain, but it must make it possible to ignore it well enough.

As soon as I returned from my father's, it was finally time to move into my new house. One-room living had been fun for a while, but after two years of toil, having extra bedrooms for guests and a grandson, along with all the outdoor space and privacy, was a welcome expansion. Because there were extra bedrooms, I once again moved my real estate business into my home. Storefront selling was nice, but having the additional flexibility to juggle all my balls was important, too.

Fall is my favorite time of year, and it's my favorite time to travel. This fall, I escaped to Yellowstone National Park via a road trip through Arizona and then north. The leaves were falling and the changing colors created carpets that looked like sunshine on the mountain peaks and trails. Yellowstone was a highlight of the trip, but I was also anxious to see Montana, this cowgirl's dream. We exited the park into the Bozeman area and spent a couple of days touring around in an early snowstorm. I loved it. I knew I would come again.

Scott got sick that fall with cold-like symptoms. He was pretty miserable for a few days, and I really started to worry. I had once asked our social worker for a realistic prediction of Scott's lifespan. He answered that ten years was a very long time to survive an injury as catastrophic as his. I had also asked what the most common cause of death for long-term severely brain damaged patients was, and he had gravely replied that it was pneumonia. Congestion was an ongoing challenge for Scott because he couldn't purposefully cough. At times like this, we dragged out the monstrous suction machine that loomed in the corner of every room Scott had occupied for the last eight years. This machine was one reason that patients like Scott didn't succumb to pneumonia as frequently as they had years ago. During his episodes of congestion, he was put on a regularly scheduled program to extract the mucus directly from his lungs. The first six months of his hospitalization he was on an almost non-stop suction routine. This involved passing a plastic tube down his throat, which caused a violent retching sound and caused his whole body to convulse. It was the one procedure I couldn't watch.

His condition improved by Thanksgiving. We spent that day of thanks in my new house. It was everything I could have hoped for under the circumstances. After several years of vagabonding around, I was able to unpack my grandmother's china, silver, and crystal, and to share the turkey day with family and friends around a real dining room table.

After the Thanksgiving holiday, it was time for Christmas. My grandson was at the perfect Christmas age. He loved all of it and his energy rubbed off. We muddled through another one, closing in on year nine. Unbelievable. Especially during the holidays, I sometimes wondered if Scott felt envious of the frequent visits that were paid to his roommate by both of his parents. I know I was. Even though they, too, were divorced, they were still a team.
YEAR #10 1991

January brought war between the United States and Iraq, a country in the Middle East that used to be known as Mesopotamia, a name which conjures up mysterious images from old movies. It was a good topic of conversation for me and Scott. I felt it my duty to keep him apprised of all the world's goings on. When my brothers and I were children, the conversation around the dinner table every evening began with a discussion of the news events of the day. My father would open up with his opinions, and he encouraged us to debate, disagree, and even argue about various issues. I took up the charge as my own children grew up. I told Scott, "It seems Iraq is in a conflict with their neighbors over oil. It's hard to understand why the United States feels we have to get involved." It seemed like a mystery until you thought about how our current president was directly connected to the oil industry. "Big business has finally catapulted into the number one power position in the world and oil is the biggest of the big." I explained. It made me wonder: if Scott had not had his accident, would he feel compelled to join up, or would he follow a different path and champion social justice as his grandfather and uncles did? Invading a foreign country that was no threat to us seemed to undermine all the values I had grown up with and had tried to instill in my own children.

I was becoming increasingly concerned about my health. My stamina was greatly diminished, and I thought that possibly having Scott so close by and seeing him more often was harder on me than our previous weekly visits had been. Every single time I left the body of my son, I was ripped apart. It was not getting easier. Seeing a son of any friend or almost any man of Scott's age immediately sank my heart. Whenever I looked at what was left of him, I slipped into the "what if" zone. It drove me crazy, but I was helpless to stop it.

The insurance premiums went up again. I wondered how long our emergency fund would last as I wrote the monthly check, now for over three thousand dollars.

A friend called, wanting someone to go with her to check out a small town in Northwest Montana that a business acquaintance had encouraged her to visit. She was intrigued and persuasive. Two days later, we were off to see the area for ourselves. The plane circled over the majestic peaks of Glacier National Park and the sparkling deep blue waters of Flathead Lake, and I was in love. I knew instantly that I belonged there.

Over the years, I'd found my one-way dialogue with Scott to be a comfort of sorts. I tried not to depress him by going on about our own situation, but I did share other issues that concerned the rest of our family. Business quandaries as well as the state of my love life were on my verbal agenda with him, and even though he was not responsive I somehow felt he understood and didn't much mind being used as a vehicle to get things off my chest. I ranted and raved to him, and then felt better, similar to the release I received from my journal.

I'm always open for a new experience, and one presented itself on Thanksgiving. Another potential long-term relationship had ended, and my daughter, grandson, and I found ourselves without a destination for the first holiday of the triad that seemed to always take me down. Cooking was the furthest thought from my mind. I thought that maybe we should go to a restaurant, but not just any restaurant. I hesitantly made reservations at the Hotel del Coronado on Coronado Island in San Diego for three. I was just sure that we would be the only Thanksgiving Day orphans and that it would be a depressing affair. I couldn't have been more wrong.

The Hotel Del, as it's called, is a sprawling, elegant white clapboard landmark that was in its heyday in the 1920s when everyone on the world's Who's Who list came to stay and frolic on its huge stretch of white sandy beach, play tennis, and eat in the glamorous dining rooms. The utter extravagance of it all was totally worth it. I was pleasantly surprised when we were shown to our table in a dining room filled to capacity with happy families and romantic couples, all dressed up and hardly looking lonesome or depressed. It turned out that there were lots of people who didn't celebrate Thanksgiving in the traditional "going to Grandma's house" way. We happily slid into a gentrified role, enjoying a seven-course meal accompanied by a string quartet playing just above the quietly bustling dining room. We took in the unfamiliar ambiance of the music and crystal chandeliers, all unexpectedly lovely and memorable. I still missed the chaos of friends and family bumping around the kitchen all day acting goofy. But at the end of the day, we were all happy and counted our blessings for just being together.

YEAR #11 1992

A friend was staying with me when a recurring nightmare made another unwelcome appearance. It was a variation on the same theme: I was leading a busy life when I suddenly realized that I had forgotten to feed my horse. I couldn't even remember when I had fed her last; in my panicked mind it seemed that it could have been months or years. In each dream, she was in a different location when I found her, barely but miraculously alive. She'd always be a bag of bones with clumps of hair falling out, a mere ghost of her former self. At this point in the dream, I'd start sobbing with gratitude, hugging and brushing and feeding her. Then I wake up. I'd always be crying. "This dream is so baffling to me," I told my friend. "I've never known what it was all about." My friend thought that the dream carried a profound message. She suggested that as I was going to sleep, I should try doing some slow deep breathing and ask myself to reveal what the dream is about. It seemed silly, but I thought it was worth a try.

As the next morning dawned, I was blown away. "I am my horse!" I exclaimed to my friend. I was the poor gal that was so neglected she was fading fast toward total collapse. "How could I not know that?" I queried. "It is perfectly clear that this is a major message telling me that I need to take care of myself or suffer the consequences. I need to move to Montana."

Leaving Scott in California while I moved 1,500 miles away was a notion that would need lots of processing and planning. This year was the tenth anniversary of Scott's accident. I still had not totally given up on his recovery, or at least on establishing some kind of communication. Ten years ago, right "after", several people had sent me books that told stories of loved ones who survived brain injuries. The stories were meant to boost my morale about my comatose son. All the tales were of recovery on some level, and a few were remarkable. None of them were about someone who never got better at all. That would not be a very inspiring read.

Recently, I had been given another book, I Raise My Eyes to Say Yes. The book validated my reluctance to give up, at least on communication possibilities. It was the story of a woman with cerebral palsy who was trapped from a young age inside a body that did not work, even though her mind was fine. Because she could not communicate, people did not understand that she was able to think. When she was twenty-five years old, she found she was able to communicate by moving her eyes. It's hard to imagine the joy she felt the first time she made herself known. With that most basic of communication lines established, she was eventually able to help write her autobiography. Scott was blind which made even that idea impossible for him.

If I only knew that he understood my dilemma and would give me permission to move. If he could only let me know that he was OK and in a place of peace in his life, I could then follow my own dream with a clear conscience. As it was, I agonized unceasingly about the prospect of leaving him. It was crystal clear that I could still hope for the best, but I needed to plan long term for the worst. I knew that if I didn't do something for myself, there would soon be no self left.

I bought my Montana dream from a video. I decided to hitch my wagon to the star of a sweet and remote town with a population of 1,200 that is only a stone's throw from the Canadian border. The next nearest town is fifty miles south. The county I chose is eighty-five percent national forest, leading me to picture myself practically living in a national park with all of the beauty, and none of the crowds. There were only two realtors in the phone book. I flipped a coin and made the call.

As I pored through the real estate information that started filling my mailbox, one property sounded especially intriguing. It had been abandoned during the construction process several years before. It was only a shell of a house, with a roof and some framed walls that graced a bluff overlooking a pristine jewel of a small lake. The view west to the mountains over which the sun set was nothing short of magnificent. It looked solid in the photos. It also looked like a lot of work. I saw my destiny. The current owner, a notorious local man of dubious background, had been arrested and imprisoned several years before. He'd been working on this sizable project for over five years. He was selling for obvious reasons, and it was a very good deal for the right person. I made the offer with the stipulation that the realtor would take a video of every nook and cranny so that I could see what condition it was in. It looked neglected but solid. After the usual negotiations, it was mine, with the condition that I would fly up before closing to make a personal inspection and give my approval. Now came the hardest part.

Other than Scott, I cared about only two people's opinions: his grandmother's and his favorite night nurse's. The tears flowed as I explained to them the need to make that move. With total understanding, they handed me tissues and told me that I could always count on them for support in doing the right thing, and moving to Montana was the right thing. They assured me they would visit Scott often, in between my own visits, and that they would regularly call and report any news, good or otherwise. My daughter also vowed to spend time with Scott, which I was so happy to hear. Big breaths.

It was harder to talk to Scott, because his own voice couldn't be heard or his face read. I told him that things were going to change. We wouldn't see each other as often. I would be making less frequent visits, but we would have days at a time together. "There's a phone jack by your bed," I told him. "I'll call you often." It was of course impossible to know his feelings, but I hoped he knew that I was doing the best I could to pace myself for what was looking like a longer and longer haul. Scott turned twenty-five that week. As if that wasn't sad enough, I heard through the grapevine that a good buddy of his was going to be a father. I don't think Scott ever even had his first real kiss.

I was itching to get on with it. I applied for a Montana real estate broker's license, and when it came, all systems were go. I listed my current house that I had worked so hard on, packed up my little car, with my large dog taking up most of the back seat, and left on Memorial Day weekend. I felt guilty, excited, nervous, and very ready. It was a beautiful but long two-day trip, one I knew I would be making on a regular basis. The spring rains did a wonderful job of creating a variety of green landscapes abundantly splashed with color. It was an absolutely excellent finale of dramatic and pastoral scenes when I entered the valley of my new bliss. The wild roses were blooming, the fragrant lilacs were just finishing up, and I felt very very close to my mother. She would have loved it here. Her favorite tree, the aspen, which did not grow in Southern California, filled every dampish crevice, and I couldn't help feeling she'd had a hand in all this. She loved Hawaii, but the mountains had called her well before that.

On May 31, I was sitting in my cavernous, partially finished workshop in Montana, a building that I would call home for the better part of the next two years. I couldn't remember feeling that content in a very long time. I knew that it was where I belonged.

While the shop was finished and well enclosed, the skeleton of the big house was not. Someone had tacked up plywood on the front of it but the back, which faced the lake, was wide open to the sky except for several steel beams and pillars that held it up structurally. I decided sleeping out there was where I wanted to be. It was like luxury camping. I spread my mattress on the floor, ran up a fifty-foot extension cord from the only power outlet, which was downstairs, plugged in a funky reading lamp, and fell asleep that first night feeling like a queen.

Before the dawn's early light I realized I was sharing my space with several families of robins who thought they had found the largest bird house ever. The chicks started squawking loudly to be fed and for at least an hour I lay there watching both the moms and dads flying in and out with trailing worms hanging from their mouths. I was home. It was the first time in my life that I had made the solo decision to live where I wanted. I. Was. Home.

The longest day of the year, June 21, took on a whole new meaning in Northern Montana. I never could make myself go to bed when it was still light and now it was staying light enough to see until almost eleven p.m. It sure was possible to get a lot done with all those daylight hours.

Right away, I rented a small cubicle office in town and hung out my shingle. Going into business here felt like I'd been transported by a time machine fifty years into the past. The first order of business was to find out who owned what properties. But in this Montana county, there was no computerized system. To find that information, I had to drive to the county courthouse, seventy miles away on a windy road. I was shocked to find that the records were all hand written and kept in enormous red leather books, each weighing at least twenty pounds. Gathering the information I needed was tedious and slow. I made the drive to that courthouse often during my first month in Montana. The road ran parallel to a ninety-mile long man-made reservoir that was heavily forested on both sides and always offered at least one wildlife sighting per trip. Slow down, I had to tell myself, no hurry. After all, this was why I had moved here, to slow down and smell the roses, which were wild and blooming in profusion.

Since arriving in Montana, I had spoken to Scott on the phone weekly. The nursing staff assured me he was doing fine, but nevertheless I booked a flight back to see him the second week of July.

Just before I arrived for this first visit, the southern part of California suffered a 6.4 earthquake. It made me feel very isolated and nervous to think about Scott being there and me being 1,500 miles away. It was a five-hour flight, with a plane change in Salt Lake City. I rented a car and was in Scott's driveway in time to have dinner with him.

Although I had been gone less than two months, seeing him was still a needed reunion. We quickly fell into our old routine of wheeling around the grounds, enjoying the smells and tastes of fruit fresh from the trees, sitting on the shady patio reading aloud, and feeding him his mushy meal of the moment. Because he didn't know and therefore couldn't object, I found myself staring at him for what seemed like hours a time. He was still so handsome, despite everything. He probably wasn't as tall or mature as he would have been, but he'd turned into a man before my grieving and still unbelieving eyes. His hair had grown in darker and even curlier than before. He would have hated the curly part. Our much-loved social worker and friend was a frequent visitor. He listened as I lamented about my disbelief that Scott was ten years post trauma and for all intents and purposes a healthy man, in body, and yet he was still in a coma.

The social worker told us that the medical community had decided on a new, more accurate label for people in Scott's current state. It was called a Persistent Vegetative State, or PVS. I hated that name. It made Scott sound so disconnected from the rest of the world. It was Elisabeth's belief after coming to see Scott that he spent his time both in and out of his body. It was true that sometimes he just wasn't "there" as much as other times, but when he was in his fullest state of awareness I was absolutely convinced that he was totally conscious and understood everything. The clue was a subtle and spontaneous change in his face. He had no muscle movement whatsoever that was within his control. The changes became recognizable only after spending a lot of time with him. Most of the caregivers he was fortunate enough to have had observed and acknowledged those small nuances as well.

A completely unknowing lump was not an acceptable label/diagnosis for me. It wasn't often that I was comfortable sharing his condition with new acquaintances, but when I did, I could not imagine using the words persistent vegetative state. Most times when I was asked the inevitable question of whether I had children, I would just say that I had a daughter. It was all too complicated to say anything else.

My little Montana office cubicle was in the heart of our pulsing three block downtown. When any person sat down on the other side of my desk, I was in the habit of asking how they found our little slice of heaven in the middle of nowhere. They almost all told me a version of the same story. Some had a friend or family member who lived here. Some were just driving through. They all thought it was the most beautiful place on the planet and wanted to stay. "Me too," I would sigh, "me too." The fact that it was remotely located and offered very few job opportunities was what saved this hamlet from the rampaging development happening everywhere else. It also made my income take a huge dive. Even though I was doing the same amount of sales, aka work, the prices paled in comparison to California, and subsequently so did my commission checks.

Another validation that I was right where I belonged was when a couple about my age came into my office. Amazingly, the woman had been born and raised in this small town and had left after high school to attend Julliard as an opera prodigy. This was her first visit back to her roots since her schoolgirl years. They had seen a "For Sale" sign of mine on a lot and were following up. "We were just passing through," they told me, "and we happened to drive down a road and saw your sign on a lakefront lot. We're interested in it." I told them the sign on the vacant lot was next to where I lived. We would be neighbors. That lot had been my first listing in Montana. They bought it and started building at once. I thought at the time that we were destined to become fast friends.

My first summer in Montana was successful on a few fronts. Within the course of a day, I often found myself in the woods, either scouting locations or showing someone the glories of the country life.

A real surprise for me was how many fall colors were displayed in this northwest area. The aspen, a favorite tree of my mother's and mine, now displayed every vibrant shade of gold imaginable. The masses of them looked like a tapestry woven into the background of the various shades of dark pines and firs.

The fall also brought heartbreaking news of Scott's grandmother's death in a car accident. I heard of this third-hand, not from Scott's father. It was a shock. As sorry as I was for myself, because she was on a very short list of allies who understood and felt my own loss, I was mostly sorry for Scott. She had been one of the two regular visitors that he had in California. Since I'd moved, I was worried that he was lonely, confused, or both. Once again I had the conversation with myself about how if he hadn't had his accident, he wouldn't be living at home either, and that this was his new life. Try as I might, I found little consolation in that line of thinking.

I had been storing ninety percent of my life's treasures in boxes spread out in various storage sheds, garages, and basements for years. Finally it was time to take them home to Montana. I loved knowing I lived there. This would be the last pick up and transport of stuff in the old U-Haul. This was my forever last refuge, of that I was certain.

In the first four years of my marriage to Scott's father, we had moved eleven times. It was the nature of his job. We got so good at moving that when the trailer was backed up into the driveway we could have the thing filled and be on the road in four hours flat. Scott had started out with some gypsy in his soul, and I found myself wondering if he just might have one more move in him.

When I returned home from my visit to California, I breathed a big sigh of relief for a couple of reasons. Number one, I was so glad to leave that crazy city and get home to the mountains. The only appeal California held for me was Scott and a few friends; without them, it would have been just fine with me if I never went back. Number two, I was so pleased to see how well Scott was doing. The gal who was the administrator did a great job creating a fun family atmosphere and Scott got lots of attention from everyone. They were always cracking jokes to make him laugh. It made everyone happy to hear him bust up at something silly, even if he couldn't control it. To laugh at all meant at those times he understood and comprehended. The question of how present he was the rest of the time tortured my mind.

November brought the first real snowfall, and it was divine. It was picture postcard beautiful and I loved how distinct the changes of season felt.

Thanksgiving would be different this year without my daughter and grandson. She had a new boyfriend, so they wouldn't be alone. I would drive down south for Christmas and see them then.

Earlier in the month, I joined the Chamber of Commerce in an effort to get more established. All I'd done since moving to Montana was work and go back and forth to California, so it had been hard to get acquainted. This town had a homestead history to it: about forty original families had intermarried over the years and many residents were related. I wasn't even close to figuring it all out.

Some of the historical stories I had heard were memorable. A favorite was about a very small town on the banks of the nearby ninety-mile reservoir. Up until the mid-1960s, there had been several even smaller nearby towns nestled alongside a magnificent river that wound down a wide and quite dramatic valley. The government decided to dam up this mighty river that had once accommodated steamboats. The little towns would quickly disappear under the flooding waters. Before the dam was completed, people salvaged and then relocated a few key buildings to higher ground. These buildings are the elevated remnants of a town that was long ago drowned. The former tavern was one of the lucky saves, and its new claim to fame was being the best cheeseburger find in Northwest Montana. I had just listed the salvaged bakery building, another building that had made the cut to be moved all those years ago. I loved that story.

December brought my usual descent into the dark hole. When I re-emerged, I packed the car, reserving the back seat for my dog, and headed south. A friend had graciously offered me her small quiet California guest house to stay in. Visiting Scott wasn't the only thing on my agenda. I had left two rental properties when I moved, and they were both in dire need of maintenance. I planned a two-month trip.
YEAR #12 1993

The drive home from California at the end of February was uneventful except for seeing my father when I stopped in Arizona. He didn't look well, although of course he said he was. Now I had someone else to worry about.

I came home to huge box of mail, including a notice from the insurance company of yet another premium raise. That was the bad news. The good news was a voice mail message from the nurses that cared for Scott. After I had left, his father had come to see him. The whole staff was so happy you could hear it over the phone. I was happy, too. If he made a habit of visiting it would ease my burden greatly when I wasn't there.

My forty-eighth birthday and Scott's twenty-sixth birthday came and went. If I had three magic wishes, one would be to fall into a deep sleep just before Thanksgiving and wake up after the dreaded holiday season was over at the end of March.

Our family is small. My father had no siblings and my mother had only one brother who lived back east. My uncle had three daughters, but we never really knew one another because of the distance between us. My uncle did his best to keep in touch and be supportive in my son's plight but the contact was sporadic at best. It was a wonderful surprise to get a phone call from him inviting me to come spend a few days at the Florida condo where that branch of the family spent their winters. He told me that I could expect a plane ticket as soon as I agreed. This trip was not only an escape, it was a reunion that connected me to some roots. It also allowed me to live a pampered country club lifestyle for a few days, which was great fun. I knew that we would never share our lives in any meaningful or consistent way, but it was good to know they were out there.

Back in Montana, the Canadian geese calling and flying overhead looking for open water was a sure sign of spring. Every day, the lake was thawing more. All I wanted to do was finish my house and just while away my time watching the wildlife on the lake through my glass wall of windows.

I had been thinking of writing down Scott's story, but I wasn't sure why. I had been stewing for days about this strange life of mine. One day, while walking through the increasingly greener and warmer countryside, I had an "aha" moment.

I had been working very hard lately on staying in the moment, not playing the old tragedy tapes over and over, and not stressing out on the "what ifs". Another gift Elisabeth had given me was the idea that a person could consciously choose happiness. Being basically a controlling person probably gave me an edge. I had been focused on acquiring green rocks. I envisioned how each one would look on the hearth of the woodstove that would be built. Foot-shaped rocks were my favorite ones. When I held a flawless green foot-shaped rock in my hand and then plunked it in my backpack, I felt myself fill with joy. It made me happy. I could still find happiness in the little things. My mother had loved rocks, too. She thought the highway signs that said "Watch Out for Rocks" meant she should look as hard as she could for the right one. It must be in the genes.

My daughter announced to me on the phone that she was pregnant again. I wondered what she could be thinking. Another fatherless child. I left for California the next week.

I made two California trips in the next three months. After all that commuting, I was getting pretty good at compartmentalizing. There was my Montana life, where I was not confronted on a daily or weekly basis with the reality and never-ending grief that seeing Scott in his motionless condition brought. There was my California life when I did see him, and it wasn't getting any easier. It had been eleven and a half years and I was exhausted. His father hadn't been back to see his son since the one holiday appearance. Each time I left him was becoming harder and harder. I was all he had.

That thought was what kept me going but sometimes I reached a point when I had pushed too far and then my body and/or mind would get sick, which would force me to slow down. It seemed like I had to experience almost total collapse before I cried UNCLE. I had another goal: to find that edge and stop before I went over it.

Having Scott so far away was not going to work in the long term. I talked to him often on the phone and his caregivers always gave me reasons to stop worrying, but it was easier said than done. Sometimes I had dreams of him getting well. His recovery was always spontaneous although it happened under different scenarios. My worst dreams were of how he used to be "before".

Fall was already upon us, and it was apparent that my house would not be ready to occupy by winter. The construction project was the worst I'd ever been involved with. While California was frustratingly over regulated, at least I could count on a level of expertise because of all the regulations. Here in podunk Montana, it was still the wild wild west where anything goes. There was no zoning, no permits, no inspections. To be a contractor, all you had to do was put an ad in the paper saying you were one. It had been quite a learning curve for me, and it had wasted a lot of my time and money. This clearly was not a way to lower my stress level.

"Hello, Grandmother Moon, this is White Buffalo speaking," was how six friends and I greeted the cold November full moon. We stood in a circle out in a meadow next to a babbling brook. We shared our feelings while watching and marveling at the huge orange orb that slowly rose over the lightly snow-covered peaks. It was quite magical and especially significant for me. I had just come back from welcoming my second grandson into a world and a family that was nothing if not challenging. As I stood by the warming fire, I felt as much peace as I thought was possible for me at that time. I needed Montana more than I ever could have imagined. Every day, I was inspired to encourage my wild natural self, and I felt supported by those around me who were mainly wise women who had all experienced the same call to the woods. All these amazing, interesting, confident, independent women, old and young, from all walks of life ended up here, just in the nick of time for me, and for that I was very grateful.

It was a two-week dash to California for the holidays filled with the usual obligations. Each drive back and forth had become more arduous, and I had stopped looking forward to them. I would need to start flying more often.
YEAR #13 1994

Often on my drive home from work on these short winter days, I found myself spellbound for several minutes just watching the end of the day grace the local mountain range with an alpine glow. Sometimes after the sun dips below the western horizon, it continues to shine for a few short minutes on the tops of the peaks on the opposite eastern horizon. It is ethereal and magical, and it was the reason I was here.

This year's birthday was a sobering benchmark. I turned forty-nine, the age my mother was when she died in a car accident in Hawaii. No goodbyes; she had died instantly.

My immediate goal was to get the master bedroom in the house livable. I wanted nothing more at that moment than to wake up with a view of the lake spread before me like a mural. Before that dream became a reality, my daughter and her brood of two showed up on my doorstep. There were four of us living together, along with two dogs and cats, in a semi-finished wide open shop structure. It was time to kick that construction goal into high gear.

Soon my daughter and I were moving me to what would be my new home. If my friends in California could have seen me, it would have brought about much shrugging and head shaking. Talk about rustic living! To get to the house you had to slog over a hundred feet through a mud bog at this rainy time of year and then teeter up a makeshift ramp to the front door. There was only interior framing, except for one walled-in room on the far left. That was my bedroom, my slice of heaven. That crow's nest would serve as my mission control station. It would be my saving grace.

So far it had actually worked out okay to have my daughter and her children live with me. Being a TuTu of two was growing on me. I got to spend a bit of time hugging and smooching them daily. When I'd had an adequate dose of them I would just trot out to my own space again.

May 5, Cinco de Mayo, had always been a blast "before". In that life, there had been multiple parties and celebrations to attend. It had been twelve years of 24/7 survival since then, and I really had to search my memory bank to recall the carefree "before" days. Of course I didn't truly appreciate them at the time, but now I looked back on them with a longing that made me ache.

One day, a well-meaning acquaintance suggested that maybe it was time for me to try harder to get over it and move on. This advice was coming from a person who had led a charmed life in many ways and had never experienced any personal tragedy. When I heard her words, it made me want to shake her and scream. My precious son is alive, not dead. Not being dead is something I dealt with daily, sometimes hourly. I was beginning to believe that his death might be easier than what we were going through. He was never off my mind, and each time I saw him I felt another measurable chunk of my heart break. Get over it? Move on? How?

During a spring trip to see Scott, there was a surprise party of sorts. The staff wanted to see me happy. They had him up in his wheelchair when I arrived, wearing his finest duds. They had tied a big "Welcome Mom, I Love You" balloon to his armrest. Down I went. I had a complete meltdown, which I am sure is not the reaction the nurses were hoping for. They were all caring and loving, and they tried so hard to be cheerful for me. Sometimes it worked; sometimes it didn't. They had caught me on a bad day. Scott and I spent the rest of the day in the usual way, with me making an extra effort to get a grip on myself. On that visit, I had to struggle very hard to stay in my body at all.

After a while, having my daughter and her boys live with me was not working. It was just too hard to have her behavior in my face all the time. If Scott were here and well, would that have changed the course of his sister's life? Another "what if" that was a waste of energy. I told myself to let all of the "what ifs" go. At that moment, both of my children weighed heavily on my mind.

The mid-summer California visit brought the usual tranquil afternoons in the shady gardens and orchards that were heavy with fragrances and bees buzzing on the long hot days. It was beautiful and warm but I couldn't wait to get home.

After every trip south, I almost felt like prostrating myself when I crossed the Montana border. The south was a rat race; Montana was the slow lane. I still did have things to be grateful for.

In September, I had a total breakdown. I certainly don't blame it totally on my daughter, but her behavior was the proverbial straw on the camel's back. After finally consenting to go to rehab for a month, with me rearranging my whole schedule to care for her children, she left the program after only five days and hitchhiked home. I completely lost it. How I ever got myself on the train to Seattle, I'll never know. My body and soul screamed, run. I knew that I phoned my brother in Canada, although I had no memory of it. From the train I got on a bus, and from there I took two ferry rides and at last collapsed in a sobbing heap on his front porch. He told me to stay as long as I needed. It took three days for me to come back into my body again, and to want to speak or even move. The next few days were spent hiking around the tiny and remote island that he had built his cabin on. It was nothing short of heaven: kayaking around its rugged shorelines, eating fresh vegetables straight out of the garden, and sitting in the warm healing sun. I don't think I changed my clothes or even combed my hair for a week and absolutely no one cared.

When I re-emerged from my catatonic state and arrived back home, my daughter and her children had moved out. Thank God.

I guess that the stress-induced suspended state that I had collapsed into was just the relief I needed to get re-grouped again. When I returned to Montana, I was exhausted, but I could feel the mindless fog lifting. It was early fall, and the aspens, poplars, and larch trees were turning resplendent shades of yellow and orange, giving the mountains spots of brilliance on the otherwise dark canvas of pines. It was time to start preparing for winter.

In California at this time of year, we often found ourselves carefreely playing ping-pong outside in our shorts. In Montana, there was a lot to plan ahead for. The checklist included getting firewood in, winterizing the car with studded tires and antifreeze, filling the tanks with propane and heating oil, draining hoses, and lots of general battening down the hatches.

Late in the fall, I took another quick trip to California. Scott's house is located in a quiet rural area, but at the time of my visit the neighborhood was full of action. The large unimproved field across the street was a hive of activity. Tractors, graders, and water trucks were hard at work turning the rolling open space into small, level building lots. Scott and I spent a couple of afternoons just sitting under the shade of the trees watching and listening to all the once-familiar noises. The sounds made his face light up with recognition. One of his last jobs before his accident had been to help me landscape a small commercial building that a partner and I had just built. He assured me that he could dig the holes with the rented backhoe for the large boxed specimen trees I was planting, and he did. He was a natural at operating equipment and he loved doing it. What fourteen-year-old boy wouldn't? Machines in any manner or form were always Scott's passion. I didn't know how much he was still "in there", but I hoped that something he heard brought him some degree of pleasure. It would do my heart good to know that.

Winter was closing in when there was more bad news. My daughter was pregnant with a third child. What a mess! In the past few years, I'd often wondered why I had children at all. If karma was real, then I must have been an ax murderer in my last life. It felt like my choices at that point were to leave my body for good or run away. Since I couldn't stay in Montana for the winter because there was no heat in my ever-evolving house, I headed south.

My faithful canine companion and I arrived in California after a three-day drive that started with a blizzard and ended in 75 degree sunshine. Ah, I did miss some things about my old California life: warm sun in the winter and the ocean. After unpacking at my friend's donated guest house, my dog and I headed straight for the shore. There is something about the smell of the ocean that is both nourishing and soothing. Even though I enjoyed the large bodies of water in Montana, it was not quite the same. I missed and treasured the soothing and intoxicating fragrance of the salt water and the sounds of crashing waves. The ocean was always on the top of my destination list when heading west or south. After a long barefoot walk in the sand I gave into my exhaustion. I literally ached with fatigue. I didn't know it was possible to feel this tired and old. Sleep was all I could think about. I vowed to never let myself get so overwhelmed again.

Phone calls came from my daughter with various tales of woe but I was finally learning not to buy into them. I was sorry for her pain, but there was nothing I could do to take it away. I couldn't be responsible for her bad choices. It was all I could do to keep treading water myself. Survival. We both handled it in different ways.

The amount of energy it took to not think about how wonderful the holidays were "before" was debilitating, but somehow we got through them once again. Scott's favorite night nurse, her husband, and her poodle, along with our special social worker, spent Christmas Eve with us at his house. Somehow I summoned up enough holiday spirit to get through all the assorted rituals. Coming up with a gift for Scott was always a challenge for obvious reasons. That year I settled for a big soft Teddy bear with a music box inside. When I was gone, the staff could wind it up and snuggle it next to Scott's ear. Hopefully it would remind him of how much I loved him and that he was always on my mind and in my heart.

On Christmas Day, an invitation came from a friend to join her and her family. They were fortunate enough to have the quintessential perfect lives. I was happy for them and sad for us. I don't think it served me well to observe all their happiness. It was sheer torture. What a crappy way to feel about friends. I felt less of a person for it. I decided then and there to get on a slow boat to China next Thanksgiving and return when the New Year's celebrations were over.

YEAR #14 1995

January brought another insurance rate increase. What was going to happen to us? Scott was the same and the money was going to run out, that was a given that the insurance company was counting on. The bastards. How did they sleep at night? The only glimmer of hope was that the United States had just elected a Democratic president who vowed to put national health care at the top of his agenda. The Republicans were demonizing the idea as a move down the slippery slope to socialism. Give me a break. Did they really think that having a single payer, all-inclusive health care system could be morally worse than forcing my invalid son off of their bottom line for more profit? It made me crazy trying to understand the logic in that. As if dealing with a catastrophe of our magnitude wasn't enough, and we should also have to worry how to pay for it? That was OK?

I was still in California where spring was springing and I was grateful to have a horsey friend to go riding with on the warm days that filled the hills with knee-high green grass and wildflowers. Having my own horse again would complete my Montana dream. Of all the outdoor activities that I loved doing, nothing could hold a candle to the feeling of utter contentment and freedom I got from climbing in the saddle and taking off for parts unknown. I was still in California on my fiftieth birthday in March. In my twenties, I had thought that this age would be bringing me such joy. My vision was of myself happily married, with both of my responsible, happy, successful children raising perfect children themselves and making altruistic contributions to society. We would gather at holidays and have adventurous family reunions annually. We would all be together and happy. Those really had been my expectations long ago.

Five days later, Scott turned twenty-eight. His last happy birthday had been fourteen years ago. It occurred to me that he had been gone as long as he had been here. I couldn't face being with him that day, so I packed up to head home, stopping along the way to see my father who had been ailing in Arizona. He hadn't seen a doctor. Another worry, and I was worried, very.

My third grandson was born on income tax day. He was beautiful of course and irresistible. Why is it that the tops of babies' heads all have the same sweet fragrance that evokes joy and contentment with just one snuggle and whiff? Puppy breath does the same thing for me. So now there were three grandchildren. My daughter needed to get sober. I knew she could do it, but when?

The end of May found me on an unscheduled trip to California, sitting in a hospital room with my father after he had surgery. Being at any hospital made me have to fight hard to stay in my body. All the many heart-wrenching memories of Scott's accident came flooding in uninvited and refused to leave. I just couldn't do hospitals anymore. My father was diagnosed with colon cancer. The surgeons removed a grapefruit-sized tumor and a two-foot section of intestine and pronounced it all good. We hoped that was true. After many blood transfusions, I took him back to his house five days later and stayed a week, until my Hawaii brother arrived to relieve me. Why had my father waited so long? I hoped it wasn't too late. I felt guilty for being angry that he hadn't been proactive with his health. I couldn't take care of everyone; I just couldn't.

"TuTu, when can I come with you to see Scott?" my oldest, then eight-year-old grandson, asked. "I've never been in an airplane." It didn't take long for me to reply that it was time he did. I think Scott was pleased to hear his nephew's voice when we made our trip south. A trip to Disneyland seemed like the right grandmotherly thing to do, too. To experience the old memories and create new ones was a welcome, pure fun, stress-free interlude for both of us. It almost seemed like my old life "before", for those few hours.

Another surprise came at the end of October. For thirteen years, I'd lived with the fear that sometime, somehow, the insurance company would renege on their commitment to take care of Scott. Those fears were activated when the insurance company sent an investigator to my Montana home with no appointment or advance warning. He had questions. "Why have you moved to Montana? Where is Scott's father? Is he still flying for the company?" All of the questions stumped me. How could I tell him that it had been years since I'd known anything of Scott's father's life? I was terrified, and tried to make the inquisition as brief as possible.

Less than a week later, I received a thirty-day notice of cancellation for Scott's insurance. I learned later that it had something to do with a technicality Scott's father's company had failed to comply with. The "raising the premium" game hadn't worked for them, and now it was over. They were going to get rid of us however they could. It was hard for me to decide who to be mad at first, Scott's father's company or the insurance rats. "Mad" wasn't really the right choice of words to describe the outrage and terror I felt in every fiber of my body. Breathe deep, gal, I told myself, and pass the open windows.

And so the battle began. Over and over, I pleaded my case to insurance commissioners and other entities. I wrote letters and made countless phone calls. It was a very futile and helpless feeling knowing there was nothing that could be done. Generally speaking, the same folks who enforced the regulations were former members of the pack that had violated the rules to begin with. The fact that the premiums had always been paid, and on time, meant nothing; this corporation was clearly omnipotent. If nothing else, I'd learned persistence, but I also was learning when to quit. Just when I had decided to accept our fate, the insurance company informed me that as a "good will" gesture they would give us a one-year extension, along with a hefty premium raise, to almost $6,000 per month. I hoped they didn't expect a "thank you" because I wasn't feeling grateful; I felt screwed.

It looked like I would be bringing Scott to Montana, to be supported by the state's Medicaid dollars. Public funds would be spent on his care, and the rich stockholders of the private insurance company could get richer.
YEAR #15 1996

The New Year came, and I hit the road south and west. My "doggy gal" and I spent a couple of days ensconced in a cozy motel room perched on a bluff overlooking the rugged Oregon coast. I needed time to think and process what lay ahead. Two gray and stormy days were spent walking the long stretches of beaches between storms or sitting under an umbrella during one, and thinking about what would happen next. Moving Scott from what I had hoped would be his permanent home would have to be discussed. He had settled in, and was loved and well cared for, and now that would be changing.

Before I left my snowy home, I had taken a tour of the local nursing home. I was pleasantly surprised by how warm and welcoming it was. I liked the idea of having Scott so close by because I wasn't sure how much longer my stamina and energy levels were up to the constant commutes of the last few years. But a nursing home? I had some preconceived notions of how that would be. My grandmother had died in one.

If only my new friends in Montana knew how I spent what I'm sure they thought were carefree vacations back to California! I hadn't shared my family stories with them. I had been trying to start over, have a clean slate, all that nonsense.

Winter in Southern California meant that the short rainy season had transformed the usually scruffy brown hills into verdant ones. The afternoons were often warm enough to bask outdoors, and Scott and I spent much of our time together doing just that. I imagined how wonderful the sun felt on his face after weeks of withering away indoors. So we sat in the warmth of the short winter sun and I explained the circumstances we faced. "Bud," I said, "we've got another real big challenge on our hands. The insurance company has trumped us. They're not going to pay your medical bills anymore so you can't stay here very much longer. I want to bring you to Montana. I'm not sure how to make that work, but I will."

Another crisis phone call from my father took me to Arizona again. He had suffered a relapse. He had undergone another surgery and would need my help. I couldn't fall apart, but was unsure how I could avoid it. My wretched bowels were screaming at me and my skin was covered in a lumpy rash. I bailed him out of the hospital again, and we spent long days resting in his yard while he healed. We both agreed that he couldn't live alone, but I couldn't stay there. Scott's insurance clock was ticking, and I needed to handle what was looking like a huge job. My father had to come home with me to Montana. Finally he relented; he would drive home with me.

We planned to leave on my birthday. When the day came, my father informed me that he would not be going. Half of me was pissed off beyond belief; a quarter of me understood he didn't want to leave his home, and the last quarter didn't give a damn. I had done all I could. I called my brother in Hawaii again for reinforcement. I had a business to tend to and a house to finish, and I had to move Scott somehow. Happy birthday to me.

On the way home from Arizona, I listened to a set of tapes a friend had given me. They were by Deepak Chopra on the subject of detachment. How fortuitous! My life seemed to be spinning more and more out of control. I wondered how I could let go. That would be a big job but Chopra's words soothed me a bit.

Talking on the phone to my father gave me no real clue as to how he was. Even though his once-strong six-foot-five body had greatly shrunk, his voice had not. He would always answer the phone in a booming tone that betrayed nothing of his current condition. "Yes," he said, "I'm getting my meals on wheels," and "yes, the neighbors check in often." I wanted to believe he was OK.

But he wasn't. He was hospitalized again with a very virulent antibiotic-resistant strain of pneumonia, and it was touch and go for two weeks. I talked to him and his doctors almost daily, until finally he was out of the woods. He pleaded for me to come take care of him. I couldn't. I insisted that he needed to come to Montana, and he had to fly. He was having none of it. In actuality, he couldn't fly on a commercial airline, as he was bedbound.

In the end, my brother and I tuned out his wishes, took control, and hired an air ambulance. After a six-hour flight, he was delivered to the small municipal airport a few miles from my house that was tucked into the valley between mountain ranges on the east and west. When they wheeled him off the plane on a stretcher, I was horrified to see his deterioration. He looked like a skeleton.

I had heat in my new house by then, but there were still no walls. I cordoned off a room for him with tarps and got him comfortable. We settled into a routine.

For the next few months, I stuffed him full of vitamins and got back into the three-meals-a-day pattern I had practiced those many years as a wife and mother.

Every day brought more strength and quality to the end of his life. An MRI confirmed the cancer had advanced to his liver. It was just a matter of time, and there wouldn't be much of it. He loved Montana, as I knew he would. Spending the last of his days together, while not wonderful, was comforting. We talked about everything. There was no stone left unturned, except Scott of course, and no pretending he was going to recover. Elisabeth taught that there was nothing more important for a dying person than to leave this world with no unfinished business. Unlike when my mother had died instantly, my father and I had lots of time to say everything, including our goodbyes.

After taking another tour of our town's forty-four bed nursing home and seeing the high quality of care provided by such a relatively small facility, I was feeling even more comfortable. Most of the staff members were locals, and many were related in some way to one or more of the residents. I was encouraged enough to put Scott's name on the waiting list. At the end of October, I received a call that a room had opened up. So it was a reality: Scott would be coming to Montana. I was happy but exhausted trying to juggle it all. I was enormously thankful for my daily walks in the woods right out my front door. Keep breathing, I repeated over and over and over.

As a last resort, when all of my other coping strategies had failed me or the stress was just flat out too much, and for some reason I didn't escape by leaving my body, I would get in my car, roll up the windows and scream. I'd scream and scream and pound on the steering wheel as hard as I could until I was hoarse, exhausted, and limp. That's where I found myself the last week in October when I had gone to California for the last time to bring Scott to his new home in Montana.

The logistics had been overwhelming. It had to be a short trip, which was fine with me. Once the decision was made, I was anxious to get on with it. I had to find someone to stay with my fast-fading father while I was gone. Leaving him alone was not an option. There was only one transportation choice for Scott, and that was to call up the air ambulance service again and book another trip. The $5000 price was staggering, but it included his care en route from a registered nurse who would ride in the back of the plane with him. I would sit in the co-pilot seat. These planes were small but very well equipped for most medical emergencies and comforts. It was another huge effort to undertake alone, and I was growing very weary.

I arrived in California two days before our scheduled flight home. On the second day, we were spending our last few hours with his caregivers, to whom I'd grown very attached over the years. The phone rang. When the administrator came back into the room with an ashen face, I knew something was wrong. Scott's father had filed a restraining order to stop me from moving Scott to Montana. The phone call was to advise me not to even think about leaving with him. What did he care if I moved him when he never came to see him or even called? My best guess was that he'd done it to punish me. A few weeks prior to this, I had asked him through my estate attorney for a monetary commitment now that the insurance had been canceled. The cancellation was, at least on some level, his fault. I didn't feel it was too much to ask for him to share any expenses not covered by Medicaid. His response was a resounding HELL NO and that was shocking enough. But this? A restraining order?

That's when I walked out the door, got into my car, rolled up the windows, and started screaming. Afterward, I felt amazingly resolute. Fuck him; Scott and I were leaving.

Early the next morning, we loaded Scott into to a medical transport van and left for the small municipal airport nearby. I expected to be pulled over by the police at every moment. I was a nervous wreck. We had left at dawn in the hopes of avoiding a confrontation. Either that plan worked or he was just bluffing and had taken the restraining order to be mean with no intent to enforce it. Who knew? His behavior was so unbelievable and inexplicable. It was as if he were a person I had never known. I continued to wonder why.

In any event, it was a trip to the airport without incident. The weather was unusually warm that day due to a strong Santa Ana wind that had been blowing for days. Those hot wind storms that blew west out of the deserts always brought wildfires to Southern California. The sun rose in a smoky haze from four ongoing blazes. By nine, we had said our tearful goodbyes to Scott's dear favorite night nurse. She had stood by us all these years and wanted to see us off. Then we were aboard our plane awaiting takeoff. When we were airborne, I looked down onto the various burning fires on the horizon. It made me feel like we were flying out of the flaming bowels of hell. Talk about symbolism. California had been hell for me the last fifteen years, and as we banked out over the ocean into the clear skies, I felt almost like an escapee. It felt right, and my body felt lighter and lighter knowing we were both homeward bound.

It was to be a seven-hour flight with one fuel stop in Utah. As the engines droned on, I wondered what Scott was thinking. It would have been hard for him to hear my voice over the engine noise. I left any comforting words to the on-board nurse sitting next to the stretcher where he was cozily strapped in. It was an incredibly smooth and clear flight until we crossed into Montana. A thick layer of clouds obscured the ground completely. When the pilot expressed his concern about landing at our small airport with no instrument guide, I burst into tears. He assured me that he would try to find a clear spot, but I couldn't be consoled. I just sobbed on uncontrollably. We circled and circled above the clouds. When we had just enough gas to get to an alternative larger airport, a hole in the clouds finally appeared. We made a dramatic dive down. When I caught sight of the small runway nestled down in the valley, my tears of despair turned to ones of joy. My daughter and her troop of three were on the runway to greet us, along with the nursing home van to take Scott to his new home. I felt like Dorothy clicking her heels.

Scott settled in nicely. I soon noticed a difference between the other special head injury facility and the Manor, as we called the nursing home. Here at the Manor, the majority of the residents were elderly, and some were here only because their bodies had given out, not their minds. My handsome son was well received by his new residential community. He captured hearts right away, and the residents and the staff considered it their mission to make sure he was well loved and cared for.

One crisis down; one to go.

The home healthcare nurses came three times a week to monitor my father's downward progression and to adjust his pain medications. The emotional roller coaster was an all-too-familiar one for me. Even though he had morphine patches, sometimes his pain was such that I had to administer injected shots of Demerol. On some days, the cocktail of medications made him loopy. On other days, he was his old curmudgeonly and witty self.

The good news was that he enjoyed every minute he had left. He took his last big meal out of bed, dressed and seated at the table on a Monday night. For days, it had been snowing in record proportions, which he had thoroughly enjoyed. Tuesday was the first day he didn't get up. When I checked on him, he was bedbound and incoherent. The end came late Wednesday, Thanksgiving Eve, as the snow continued to fall. My brother from Canada and I each held a hand, and we watched and listened until our father's rasping breaths stopped.

Just when I thought it was not possible to feel any more despondent going into the dreaded "happy holiday" season, now I was an orphan. I missed my mother. I missed my son. And now I missed my father. My children had no grandparents left, and we were totally alone. Helpless and hopeless didn't begin to describe how I felt. Still, the natural order of things was that parents died first. I was grateful to have had my father until his seventy-eighth year. Losing a child first was not how motherhood was supposed to play out. I clung to the best old saying my father repeatedly quoted: "This too shall pass."

YEAR #16 1997

My father wanted his ashes scattered where we had spread my mother's. What a sad surprise it had been to hear that request from him before he died. It had been fifteen years since my Hawaii brother and I had paddled a canoe out to the middle of Kealakekua Bay to deposit our mother's ashes. They had had twenty years of marriage and five years of divorce before her death. Now they were reunited. The grandparents Scott had never really known would be together again.

As my brother and I once again paddled out in a flower-laden outrigger canoe, we were extremely sad and full of speculations. What would our lives have been like if our parents had never gotten divorced, or if our mother hadn't died so young? Scott was only two when she was killed after moving to Hawaii two years before. He had no memory of her, but I hoped he remembered with fondness the Christmas that he and his sister and I had spent in Hawaii when he was eleven. I spent two weeks sharing as many memories of his grandmother with him as I could. His uncle took him surfing for the first time in waves bigger than he'd ever seen before. He wasn't quite comfortable, but he paddled bravely out anyway. We swam together with the dolphins in the bay where his grandmother's ashes were. Those were good connections. Now when I returned to Hawaii, I would feel both of my parents together again.

Scott turned thirty. I tried not to, but then I let my imagination run wild, just for a few minutes. At thirty years old he would have a wonderful career established, not to mention a beautiful wife and more grandchildren for me. I had to wonder where his father would have fit into his life, or rather how Scott would have fit into his father's. How could a man just stop seeing his son? How could he not even ask about him? Maybe because he hadn't ever dealt with Scott's care or financial worries since the accident, it was easy to just not think about him at all. Maybe that's the next step after "I'll think about him tomorrow". What could Scott be thinking about his father's abrupt and complete departure from his life? It was something I never even tried to explain to him because it was so unfathomable.

The return from Hawaii was my mobilizing reality check. So much to do and think about. Scott and I had fallen into a nice twice-weekly routine. We always read, and I invited other residents to join us. Every Tuesday morning, there were between six and ten attendees of "story time". The favorite genre for the old timers was western pioneer stories. Before they came to the Manor, some of those eighty to ninety-year-olds had still lived in the homesteads they were born in. They enthusiastically agreed with the stories and expanded upon what life was like as a homesteader in Montana. Tuesdays quickly became my favorite day of the week. In the warm months, after we were finished reading, we would head outside for the fresh air. Pushing Scott into town or even around on the streets wouldn't work because of the distance and terrain, but we walked all around his new home on the hill with so many new and grand vistas, smells, and sounds to share and explain that it made our time together fly. I decided I couldn't come more often than twice a week for emotional reasons. It was a comfort knowing he was so close and well cared for, but after all these years just seeing and being with the remains of my precious boy still ripped my heart apart. For my own survival, I had to manage the stress it brought.

It was full speed ahead on the completion of what I had decided to call the "Heron House". Whether I could afford to keep it when it was finished was another thing entirely. When a friend suggested a way to make some money keeping it, I was all ears.

"Computers all over the world have been connected together into something called the Internet," I told Scott one day. "For a fee, anyone can put up a page on it and advertise anything they want. That's what I'm going to do to rent my house." After asking around, I found a computer geek who knew how to list my house as a weekly rental and/ or Bed and Breakfast on this "world wide web". In a few short weeks, I accepted my first reservation for the end of October. That was my deadline; now the Heron House had to be finished and completely furnished, down to forks and spoons. This project fed my creative needs. A long-time goal of mine had been to be able to quit selling real estate and just do my own buying/selling/ building thing. I had been so very close to making that transition when Scott had his accident. Maybe I could still pull it off.

My heart got a bit lighter in the summer when my neighbors, who had been my first Montana customers, arrived for their yearly visit to their sweet log cabin next door. We had become closer with each visit. On this visit, they confided something they didn't share with everyone. They, too, had a severely brain damaged child, a daughter who lived in an institution. I wasn't alone anymore! It opened the door for me to share Scott's story with them. Exchanging our mutual tales of woe was a bonding moment for all of us. Even though their story was not like Scott's, the results were the same. Both of our families had been indescribably affected by the very unusual circumstances in which we had lost, and yet not lost, our children. They also had another child, a younger daughter. She didn't know her sister "before". I envied that this couple were partners in dealing with the ongoing responsibilities and grief. When the male half of that couple asked if he could go with me to meet Scott, I was overwhelmed with gratitude.

Although I have many friends and acquaintances, few had ever visited Scott before. When my neighbor accompanied me on the next visit, I felt so full of love for that gesture. I brought Scott's nephews to visit him often, but his sister's visits weren't regular, and what was left of the rest of his family never visited, except for my Hawaii brother on his infrequent visits to the mainland. Scott had been a party animal, very social, and had been engaged in constant activities. Thoughts of how isolated and alone he must feel all the time weighed heavy on my heart.

At every facility he'd lived in, I'd stressed the necessity for as much companionship and stimulation as possible. His new home, the Manor, did a good a job but there were forty-four residents and the staff was always overworked and underpaid. If I happened to visit and he was not included in whatever event was going on, I wasn't happy. I still clung to the belief that his awareness was intact, but because there was no outward sign of that, not everyone spoke to him on that level. I brought up my requests and concerns at the quarterly evaluation meetings, and the more the staff got to know Scott, the more they leaned in that direction as well. They hadn't been specifically trained in caring for brain damaged people, but they were slowly catching on to all the subtleties his condition presented. All in all, his care was top notch, and I knew for sure that he was loved.

YEAR #17 1998

My New Year's resolutions sounded like a broken record. Each year, I vowed to find peace. It sure seemed like I'd tried everything to achieve something that still eluded me. All my wishing and worrying, trying every remedy I heard or read about had done nothing to relieve the ongoing everyday gloom. Maybe I needed to switch gears and give up on all the fantasies, and just be thankful that I'd survived another year and was still standing. I had to give credit for that to my ever-supportive friends and to my always ready and waiting journal into which I poured my heart and soul almost daily. And then there was wilderness. I would surely have perished long ago had I remained in the California concrete jungle. Nature's comforting solace was something money couldn't buy, and something I couldn't conceive of ever living without again.

Scott cracked up when I described my first ice skating experience on our frozen lake. I had cinched myself into skates before, but at an inside rink, with a railing and ice smooth as glass. This experience was a little different. I carefully launched myself from the plastic chair I had hauled down to sit on while lacing up my thrift-store skates. That first try, I felt like I was three years old again. My legs wobbled as I tentatively stepped out on to the less-than-smooth surface. I hadn't gone ten feet when my toe pick hit a crack in the ice and down I went. Note to self: bring knee pads next time. But practice made me better, and after a while I could stay upright for long stretches down the shoreline. I was hooked. It gave me the same sense of freedom that horseback riding did. It was freeing, almost meditative. It kept me in the here and now because it took all my concentration to stay upright.

Skating has a short season in Montana. It can only be enjoyed when the perfect conditions of very cold temperatures and lack of snow or wind come together. When they do, it's "carpe diem": drop everything and go for it. Once in a while, the lakes froze glass smooth and crystal clear, giving the distinct and eerie feeling that you were gliding on open water, observing fish swimming under your skates. Smooth ice equaled fast ice, and impromptu neighborhood hockey games were very exciting, with pucks skimming along for blocks at a single whack. Watching and listening to all the young men gracefully sliding – and not so gracefully crashing – amid wails of glee brought me a joyful and yet sorrowful heart. Why wasn't my son enjoying this too? It was so unfair that I wanted to scream, but my father's words in my mind would stop me. "Carol," I could hear him asking, "whatever gave you the idea that life was fair?"

Scott seemed content in his new home. It truly was one big happy family at the Manor, and he'd captured many hearts. Staff, other residents, and even their family members were all his fans. I was especially grateful for a man who visited his mother often and had taken quite a shine to Scott. Not only did he take the time to talk with Scott, but when the weather permitted he also pushed him around the grounds outside. Hearing a man's voice after being almost totally and constantly surrounded by women and all their girly woes hopefully brought Scott a measure of joy. The caregivers were all attentive, of course. They were always trying to make him laugh by telling him jokes or changing his appearance with new hairstyles or different beard and mustache configurations. Still, it's not the same as having special attention from someone who isn't being paid to do it.

I took my annual winter trip south to Arizona accompanied by my now very well-traveled dog. After two weeks on the road, visiting various friends on the way, I finally arrived at my father's former house, exhausted, bedraggled, and rain sodden. Torrential rains had followed us as if we were magnetic. There was lots of work to do. After sleeping and resting for a few days, I regrouped and headed for the paint store. The plan had been that my brothers would join me there and it would be a team restoration effort, but they both declared at the last minute that they wouldn't be coming. They were too busy. The Little Red Hen in me was pretty pissed off. It was very disappointing. I was only one person, and so the project went very slowly. Scott had never had a chance to visit his grandfather's house, although he had spent a good deal of time in Arizona "before" and loved it there. His help, with which he had been skilled and generous with, sure would have been much appreciated then.

With the dreams of an Arizona family reunion abandoned, my focus immediately became how I could possibly hang on to this place by myself. Part of my heart belonged in this quirky little village because of the memories it held of my father, but even with him gone I was still drawn to it. The community was mainly seniors who lived in neat little stucco houses that surrounded a lower middle class golf course. You were welcome to play in flip flops and tank tops if you pleased. It was a course where you would never see rich businessmen or politicians whacking balls around. The lure for me was that I could be anonymous, and that in less than five minutes from the front door I could be walking in thousands of acres of wilderness where it was warm enough even in the winter to go without a jacket. My eighty-year-old neighbors and the other retired homeowners made me feel like a youngster, even though I had just turned fifty-three.

When I returned to Montana from my road trip two months later, I fell back into the same routine. Tuesdays were reading group days, and we were progressing through the classic story of Black Beauty, one hour at a time. Even an hour was too long for some of the residents to stay alert. Some nodded off intermittently while my voice droned on, making me wonder how many were really following the story at all. But it didn't matter to me. I was reading to Scott anyway, and the more the merrier. I knew they all looked forward to filling that slot in their activity calendar.

The Manor staff knew the gruesome details of Scott's accident but were curious to know how helicopters came into our lives to begin with.

I was only twenty years old and a new divorcee with a two-year-old daughter when I met the man who would be Scott's father. It was an immediate attraction for me on many levels. His good looks and many skills appealed to me in a big way. He had also been married before, and he also had a two-year-old daughter. He was the ripe old age of twenty-seven.

He had already experienced several career starts, but his big dream was to someday learn to fly airplanes and become a commercial airline pilot. When we married a year or so after we met, we both cherished that vision. Family members of airline pilots get free flying privileges. My mind was filled with fantasy trips to exotic places. Because he didn't have any military training, unlike most other commercial recruits, to get licensed meant paying for flying school ourselves. I was three months pregnant when he decided it was time to sell the rental house he owned before meeting me, and follow his bliss. He was bound for a top-notch flight training school in Reno, Nevada. My daughter and I moved in with my divorced mother and two younger brothers in order to save money. He assured me that he would be finished, licensed, and back home in plenty of time for our baby to be born, and my enthusiasm for this adventure soared along with his. At the end of the four-month of the training and licensing period, I was longing for and counting on his imminent return. Then I received a phone call that changed everything.

"Honey, I took a helicopter flying lesson today," he told me excitedly on the phone one evening. "It was great and I think it would suit me better than flying a big commercial airliner. I really want to fly both, but focus on helicopters. It will take more money to get a dual license so I'm going to borrow money from my father. It will mean not coming home for a couple more months, but you have my promise I will be home before the baby is born." My heart sank. Our baby was due in two months and now all of my expectations of a life filled with glamorous travel were down the drain.

In two months, he did return home and the next night I gave birth to a much longed-for beautiful baby boy. I soon found out that my husband's main job prospects were in the agricultural business, which left nothing for me to be very excited about. In the next four years, we moved eleven times. I felt like a migrant worker. My hopes of living the privileged life of an airline pilot's wife were dashed. We eventually came to buy our own crop-spraying business, which he continued with until Scott's accident. And that was how helicopters had come into our lives and then destroyed them.

Spring turned into summer after my return from Arizona. With a heart as heavy as the Titanic, I got through the two holidays that all orphans would love to cancel: Mother's Day and Father's Day. As difficult as my father could be, I sorely missed the last connection to my roots. The loss of my mother had been a hole in my heart for almost thirty years. I know that Scott's various caretakers meant well when they presented me with a Happy Mother's Day card from him, but then I mourned his loss even more.

It had been a good season for my now-finished vacation rental. The summer faded into fall, bringing a large measure of joy my way. At long last, I bought a horse. The pleasure I derived from disappearing into the woods with him that fall when the stress felt like it was on the verge of crushing me could not be overestimated. Almost as soon as I slipped into the saddle, I was fifteen again and free. It was amazing how a simple afternoon easing up a trail into the mountains could transform me. My sweet "pony man" gave me another tool to re-energize and combat my hopelessness.But fall was short, and soon winter set in. The temperature dropped so quickly that the lake froze literally overnight. It was time to trade my riding boots for snow shoes and ice skates again.

Another depressing holiday season was upon me, made worse by my fatherless daughter's ongoing problem with alcohol. I was at a loss as to what to do. I could only speculate what pushed her from social drinking to addiction. I had heard about "survivor's guilt" and wondered if that was a cause. Or was the loss of her brother the final abandonment and her poor lonely heart just couldn't take anymore? Maybe trying to drown her pain was the only thing she could do. It made me so sad to watch my beautiful first child go down such a destructive road. If only she would seek the help she so needed.

YEAR #18 1999

As the New Year began, I heard the lake speaking to me louder than ever. It spoke to me through all the seasons on some level. I heard it in the mournful calls of the loons from spring until fall, and the reflections of the looming mountain peaks on the calm waters always took my breath away. In the summer, the thunder clouds rolled in and turned the quiet surface into a white-capped sea. But winter was the most ethereal season of all.

When the temperature takes a dive below zero and the lake freezes hard, she moans, mainly at night when there aren't many listeners. But I hear her. How many people have had the very good fortune to live on a body of water where there are winter ice concerts? My lake offers serenades, often loud ones that range from long, low animal cries to shrieks and zings. Some moans sound as if the lake were wailing over the death of a loved one. When the lake sounds like that, it brings up a grief that is so deep in my belly that I wish I could also release my stress and sorrow like that. The long, low groans always bring up sadness on some level, but they comfort me, too. I feel unsettled, and at the same time I am connected and reassured by them.

My three grandsons took turns spending the night with me. They all knew, even the three-year-old, whose turn it was, and they knew that time spent with TuTu always included a visit with Uncle Scott. On one visit, grandson #2 was intrigued by his uncle's new look, which Scott would have hated. The nurses who created it called it his "Elvis look", a classic pompadour on top with sideburns past the bottoms of his ears. When we all started singing "You Ain't Nothing But a Hound Dog" both my boys cracked up. The more Scott laughed, the more my grandson laughed, too, which made Scott squeal and screech even more until he could barely get his breath. Sometimes when an incident or joke tickled his spontaneous funny bone, he would have a hard time stopping, and the volume would rise until it was loud enough to hear up and down the hallways. When that sound echoed around, everyone within earshot smiled, too.

The nurses loved to hear stories about Scott before his accident. I told them how incredibly fussy he had been about his hair. He could be dressed in holey jeans and a ratty tee shirt but his hair always looked like he was ready for a photo shoot. He had inherited his father's thick curly hair, and he hated it. It made him look too pretty, like a girl, he said. He grew it shoulder length so it would straighten out a bit. As if having it long would make him less pretty! When it got too shaggy and needed a trim, it was like pulling teeth to get it done. In fact he probably would have preferred a trip to the dentist to a visit to the barber.

Being a mother who felt it wise to choose her battles, I didn't push for shorn locks very often. When I was resolute about it, I usually had to trick him one way or another to get him in the car. After we had traveled far enough away from home that he wouldn't jump out of the car and run, I would confess my plot. He always put up a fuss but eventually acquiesced and would beg to at least be bribed with a new goody or treat. Seeing him now made me aware of all the physical changes his body had progressed through without him. Why didn't I take him to get a haircut that fateful day? I asked myself. Everyone loved his hair story, backed up by my bringing in a photo of him "before" with shoulder-length locks.

My grandsons were always a hit with the residents and staff. A visit to Uncle Scott always included a trip to the kitchen to beg for cookies, and then a rousing recital of Horton Hears a Who, with its pages worn and tattered after all these years. Scott fell in love with that adventure story about personhood at the age of two, and it had been a part of our lives ever since.

This year, I took the escape trip of a lifetime. My uncle, whom I seldom saw and hardly knew, wanted all of us girl cousins to connect together on a trip to Costa Rica, with almost all expenses paid. Really? Wahoo! Our families could not have been raised more differently. My family excursions were camping, hiking, and riding waves. My uncle, who was a man of means, and his family spent their free time together at the country club and on cruises. Traveling first class was something I was unaccustomed to. Even though I had no practice, I adapted to all the pampering as if I had been born having it.

I loved Costa Rica. Somehow I had gotten the mistaken notion that Central American countries were backward in regards to their educational and environmental custodial responsibilities. It was a shock to see how far ahead of the curve they were when it came to planet care. Costa Rica had dedicated twenty-five percent of its land to national parks, to be saved forever. The population also boasted a ninety-five percent literacy rate. Costa Rica held a draw for me, to be sure.

I returned to Montana and my usual routines. Whenever the sun peeked out of the clouds, Scott and I headed outside to soak it up. A cruise around the premises in his wheelchair always included finding a shady spot to sit where I tried my best to describe to him the breathtaking views of the rugged mountains surrounding our lush valley that the river really does run through. It's paradise. There were often deer and sometimes elk grazing on the hills right next to the parking lot where we walked and we almost always could hear the screech of an eagle or osprey checking out the river from above. Clearly, our favorite time of year was when we could be together outdoors.

This year, because my yard had grown mature enough to appreciate and show off, it seemed like a good time to have a garden party for Scott and some other residents at the Manor. Several of my "story time" pals came along with a few other residents and a couple of staff assistants. The Manor had a van that accommodated five wheelchairs and six mobile folk. It was a loved and well-used vehicle, one all the residents vied for rides in. Loading and unloading all those wheelchairs took a bit of time, what with all the belts and ties to be secured and then unhooked at the destination. It might have been a two-hour outing, but it was a one-hour garden party when you subtracted transportation time. I couldn't tell if Scott understood we were at my house. He was alert and seemed to be listening to lots of new sounds. When I brought my horse over for a nuzzle, Scott's face lit up, but how much of it was processed in any meaningful way was a tormenting question for me. Because of Scott's past, which included two horses at our ranch, one of the nurses suggested that he might enjoy the horse therapy program that a few of the other residents attended monthly at the nearby fairgrounds. Hmm, great idea!

By the time we had finished our cookies and lemonade and a favorite resident had played a rousing harmonica solo, it was time to go. I think we all loved that adventure and next year would bring an encore for sure.

Summer sprinted into fall and brought the first celebratory event of the holiday season. Even though it led to the dreaded rest of the very difficult end-of-the-year celebrations, I always loved Halloween. The yearly ritual of trick-or-treating now included sharing the fun of it with those at the Manor. We went there first. It was a hugely anticipated highlight for the residents to have visits from the many costumed children. As we came through the entrance into the lobby, they were lined up in their chairs along both walls waiting for the excitement of luring over the little ones with sacks of candy. Residents that were bedbound could still participate by putting up a big "Welcome" sign on their doors that meant, "There's candy in here, too." Scott got to join the fun in an abbreviated way, as the kids pushed him along the halls in search of the decorated doors. Next, our annual family procession tromped down the hill to the tree-lined streets of the town center. Those four or five blocks of houses are always a frenzy of activity on Halloween. Families who lived in the hinterlands all converged at once on the small but welcoming neighborhood of treat givers. It was good that there were only a few streets, because after cruising them we were always frozen to the bone. At this time of year in Montana, a warmer witch costume was more popular than a fairy outfit.

As the end of every year neared, I worried more and more about the toll that my body was paying. I listened to my affirmation tapes, practiced my yoga, and screamed until the cows came home, but it was always the same. Winter would find me sobbing in the bathtub for nights in a row. And somehow I would survive another year, which I was just beginning to realize had become a goal in itself.

As the millennium clock ticked forward, rumors abounded about a worldwide computer failure, called "Y2K". Trying to explain to Scott what it was all about was a challenge, and a friend asked why I thought I needed to. I wasn't sure. Maybe it was Rip Van Winkle wishful thinking. Scott was just sleeping, growing a beard, and when he woke up, he would need to know what had happened while he slept. It was my job to make sure was he kept up to speed. He didn't even know what a computer was. His accident had ended his knowledge of technology at VHS tapes and word processors.

"A computer is like a typewriter," I told him, "but it has a screen, like a small television that brings images from all over the world. All you need to do is type in whatever you want to see, buy, or know, and up it pops. Computers are so amazing you can get mail from friends on it, and even more. All of the computers in the world are hooked together now," I went on, "and they do many jobs that people used to do, like controlling airplanes, trains, banking, and clocks. It seems that when all the smart people wrote and implemented technical programing codes, they forgot to tell the computer's inner workings about changing the millennium date to 2000. Those silly old computers that run so much of our lives can't recognize the new century. Now there is fear that we might be stuck in the 1900s." I ended that explanation with a good chuckle, and Scott laughed, too.

On New Year's Eve, me, my daughter, and the kids were joined by a group of friends and neighbors who decided to make luminaries and a fire for ice skating down at the lake. Almost on cue, when the midnight hour came, the moon abruptly disappeared. The ringing in of 2000 brought with it big fluffy flakes of snow. The harder it snowed, the more we all whirled and twirled across the ice in a state of near ecstasy. It was magic.

YEAR #19 2000

As Scott and I entered this new century, I wondered how much longer I could carry what was becoming an ever increasingly heavier load.

Sometimes I speculated what it would be like to be a friend of mine. This is what I knew for sure: every one of them wished they had a magic lamp that would take it all away – all his suffering, all my grief. The impotence they must feel watching from the sidelines had to be very frustrating. Friends and their support enabled me to make my ascension from one rung in my survival ladder to the next.

One friend and I had a conversation about acceptance. She asked if I saw myself coming to a place of acceptance anytime soon. For me, that word evoked both closure and healing, and so far there had been none of either, because it wasn't closed, and it couldn't heal. "You know, one morning, I had a handsome, independent, and physically gifted son; by that afternoon, there was nothing left but a breathing body. Seeing him lying there suffering year after year certainly has not brought acceptance. Each visit brings a further festering of a still open and very painful wound. Acceptance? I wish I could. Maybe someday it will come and I will always remember that you held that wish for me."

Scott's father, on the other hand, seemed to have not only "accepted" his son's loss, but to have moved on. The key for him to do that must have been that he would just never see Scott again: out of sight, out of mind. It was over and done in his mind maybe, which had brought him to a place of onward and upward. That was only a mythical state for me. How could you not stand by your child? How could you not support your ex-mate (that would be me) with whom you'd remained friends even after separating? And then Scott's accident happened and you weren't friends any more? Often, "before", I had invited him to come over and have a family Sunday dinner together. I thought we were allies and friends. I kept trying to understand him, but the harder I tried the more rage welled up. Could it be that Scott's father was able to just abandon us both so that he could move on? That was what it looked and felt like to me.

Sometimes my escapes were for business. One trip took me to Arizona to close the sale on my father's house. While I loved Arizona and would have fled there every winter, it wasn't a dream of either brother, and I couldn't carry the ball alone. I had fun visiting my old So Cal pals as I worked my way north. It was always a measure of pleasure to be a city mouse for a while, but my inner country mouse was always relieved to get back to the wide open spaces.

It was still very much winter when I returned to Montana. I was excited to hear that Scott had been accepted into the horse therapy program, which was held inside a warm barn at the nearby fairgrounds. Once a month, he was loaded into the van with four other residents to make the fifteen-minute drive. I'd always encouraged everyone to provide as much stimulation as possible for Scott. Sound and smell played a big role. Being unloaded and pushed into the small arena inside a barn would arouse anyone's senses. The smell was a pungent and comforting combination of horses, loose dirt, and a cozy wood-burning stove.

A friendly and fun middle-aged couple got paid, somehow, to travel around the state with their two gentle old horses and bring joy wherever they went. Two local volunteers rounded out that very able crew and managed to get wheelchair-bound folks from sitting in a wheelchair to sitting upright on an unsaddled horse.

One of the residents was a third-generation local woman who had grown up galloping around the countryside and racing barrels in rodeos. She had been forced to give it up when multiple sclerosis stole her mobility. Watching her being slowly led around in a circle and seeing her eyes light up put a big smile on every face. She had lots of help to stay upright. All four of the handlers walked beside her to keep her balanced. That experience, however brief, was the highlight of her month.

Getting handicapped folk atop a horse was a group effort that necessitated some special equipment. The mounting contraption was a wooden structure about fifteen feet long with an easy ramp up to a large platform that stood about six feet high. The rider walked or was wheeled up the slope, aided by two people, to the platform at the top. The horse was led up alongside. Two other people on the ground stood beside the horse. Together, the four assistants somehow managed to get even the very low-mobility riders astride a patient animal who only wore minimal equipment. On his bare back, that gentle old boy had a soft pad securely cinched that had a large strong handle of webbed material attached at the front for the rider to grasp onto. I was fascinated to see bodies that had been strapped in and slumping in their wheelchairs now sitting upright on the very slowly moving and swaying horse. It seemed a horse's walking motion was just the right movement to help facilitate balance for those with muscular and strength problems.

Scott had no muscle control at all, including not being able to hold his head up. Riding double was not an option. Scott had to settle for barrel riding. It was a good alternative, and one I think he enjoyed. Getting him aboard the large fifty-five gallon metal barrel that had been outfitted with the same pads and handles as the horse was much easier because of the height, but it was still more than a two-person job to keep him upright. I would gently hold his head up while the other four held his body straight as we slowly rocked the faux horse from side to side. As he swayed back and forth, the real horse stood within close smelling distance. The crew kept up nonstop banter and hilarious jokes that eventually would have Scott laughing so hard he would get breathless. It made my heart glad to see him so happy.

At Al-Anon meetings, people are advised not to have any expectations of changing someone else's behavior with nagging, pleading, or threatening. Some people change when they hit rock bottom, and some don't. It was an individual experience. My daughter hit hers. Our local social worker/therapist advised me that it was time for an intervention. Thankfully, she had convinced my daughter to try treatment again.

I'd come to wonder if maybe happy endings hadn't been written in my daughter's life book. She'd suffered so much sadness, abandonment, and loss. That said, I also knew she was smart and strong, and if ever she needed and deserved a miracle, this was it. When she made it through her sobriety program, I breathed a huge sigh of relief. By Thanksgiving Day, she had been sober for almost five months. As our small clan gathered together, we all bowed our heads in thankfulness for the same thing: her success.

As winter set in, Scott's health was in decline. The very hardest day of the year, other than his birthday – which I couldn't face, period – was Christmas Eve. It brought up all the memories of the "Santa" years we had spent as a happy "mommy and daddy together" family. Christmas Eve this year with Scott was awful. He'd had a bad ear infection for some time. No amount of antibiotics stopped the copious amounts of goo oozing from it. It was gross. I could only imagine what it must have felt like for him. Additionally, he had developed a nasty rash over almost all of his body, with the most red and raw looking pustules around his feeding tube. He looked miserable. He was in his bed, not in his wheelchair, when my daughter, the kids, and I arrived. He was not alert, but we carried on with small talk, opened some trivial gifts for him, and had the annual reading of How the Grinch Stole Christmas! The Grinch may not have succeeded in stopping Christmas in Whoville, but he sure had stolen whatever joy I had left in me.
YEAR #20 2001

Finally, either the drugs kicked in or Scott just plain beat the ear infection, and he was better and back to his regular routine. Winters are long in Montana, and we were restricted to indoor visits after our "story time" reading. The halls were short, but there were always many residents and staff to say "hi" to and chat with. In the outdoor-unfriendly months, we would cruise those small indoor spaces repeatedly, with me talking non-stop to him about all the latest news and woes of the day.

With Scott's condition stabilized, I left for a month long trip to Hawaii. It may seem like a month is a long time, but I needed every bit of it and more actually as the years went by and the crises were only compounding. I felt fortunate to now have my Hawaii brother's Kona hideaway all to myself when I visited. A couple of years ago, he'd moved a few miles up the mountain to live with his girlfriend and their daughter. I got spoiled knowing that his empty nest was always waiting in Kona for me.

My pattern was pretty predictable when I was there. The first week, I would sleep a lot. I mean a lot. By the second week, I'd be starting to breathe deeply again. Soon after that, I would give myself permission to get single- and simple-minded: what beach should I swim and relax on that day, and what should I take to eat?

My favorite beach had started out long ago as one of the local surfers' secret spots, one favored by my brother and his friends. He'd been riding those waves since he was sixteen. He was an environmental activist, and when he found out that a hotel was trying to buy that very historic piece of shoreline for development, he and his friends waged a long and difficult battle. When he turned twenty-eight, they won. It finally became a state park. The almost impassable two-mile road over the lava fields from the highway to the beach was a deterrent to most tourists. It was traveled frequently by my brother and his fellow surfers, however, who still swooned when the waves broke exactly right out on the point. When the waves were really good, there were more than a few hardcore surfers who would call in sick to work, then jump on their boards and head for that special break.

This visit brought a fun new Hawaiian pastime: paddling in six-person outrigger canoes. My brother connected me with a friend of his in the local paddling club. There were ten such clubs on the big island of Hawaii. They were all very competitive, with races and party celebrations held nearly every weekend. A special division was the Kupunas, the age 55+ team. They trained three early mornings a week. If there was an open seat, which there usually was, I joined in. "Early morning" meant just before dawn. I got spoiled watching the sun rise over the dormant volcano as the six of us paddled up and down the coastline oohhhing and ahhhing. We were joined almost every morning by our dolphin friends. I really think they looked forward to seeing us as much as we did them. They always came very close as they frolicked around us, some of them jumping out of the water and spinning in apparent ecstasy. But the ultimate sign for this old Pisces gal that life was still good was the dawn that an enormous humpback whale breached so close to our boat that we could see the barnacles on her skin, and we all swore that she was smiling and looking right at us. I had long known why my mother chose to move here and become an island gal. The lifestyle suited me just fine, too.

At the end of my visit, I offered to take care of my three-year-old niece, who would have been my mother's granddaughter. Her parents were to have a one-night honeymoon, all alone. It was her first night without them. She was fine all afternoon, until dinner. I saw tears rolling down her cheeks as she fumbled around with her macaroni and cheese. I asked her what was wrong. "I miss my mommy and daddy," she said. "I'm not happy, I'm sad." I knew just how she felt.

Scott had been symptom-free from his last illness for only a couple of months when it returned with a vengeance. The stinking thick fluid poured from his ear, causing his skin to break out again. This time it was further complicated by another weird problem. When Scott first suffered his injury, he was operated on several times. The back of his skull had been destroyed. If he had made any kind of a meaningful recovery, like being mobile again, the doctors would have surgically placed a piece of metal over the large soft spot that had grown over with just scalp and hair. You couldn't tell much by looking at the back of his head, but it was very sensitive to pressure of any kind. In that soft squishy tissue, a very small opening appeared, and it was seeping a fluid of some sort. I couldn't imagine the suffering he was going through, lying or sitting in his chair unable to do anything about it. All of the staff were attentive, but they felt worried and helpless as well. We started on yet another round of medications and cleansed his wounds constantly. In the end, we decided to keep him in bed doped up enough to relieve his misery. As any mother knows, it's a terrible feeling to watch your child suffer, and Scott suffered over and over and over. The more complications he had, the more wind it took out of my already flapping sails. I could feel my own life force getting dimmer and dimmer watching him in so much pain.

Years ago, when I was appointed his conservator, I had signed an advance medical directive for Scott. It complicated my love and duties. I was left wondering at every small turn in his ever-declining condition if I was doing the right thing by treating whatever additional ailment befell him.

Medical directives are documents that spell out your wishes when your life may be ending. They clearly communicate what procedures you do and don't want if you are found in a life-threatening situation and can't express your wishes yourself. When I signed Scott's, I signed an identical one for myself as well. If we found ourselves compromised to the extent of no quality of life, we didn't want to extend the inevitable. No code. It meant not to try to restart an already terminal heart. It meant no potentially lifesaving surgeries or other measures if all hope was already gone.

I signed both of our directives years ago, but as time passed I was increasingly confused and uneasy about what to do for him. Making your own decisions was one thing; making them for someone else was quite another. Technically, the feeding tube implanted into his stomach was a lifesaving measure. It had been put in within weeks of his accident, back when we all had hope for his recovery. Without it, he would have died long ago. All his liquids and medications were delivered through a little rubber hose in his belly that routinely had to be replaced, sometimes with great difficulties that required trips to the hospital.

There had been a lot of publicity about whether removing a feeding tube from someone constituted cruelty. Nancy Cruzan was a woman who had suffered catastrophic brain damage in a car accident in 1993. Seven years later after no recovery, her feeding tube was removed, but not without a huge public debate. Everyone had an opinion of what should be done. Her parents, who had the ultimate say and chose to remove the tube, were told by some people that they had her blood on their hands. Before modern medicine figured out how to save people through technology, parents didn't have to suffer such agonizing decisions. Those life and death calls were made by Mother Nature. Scott had had many lifesaving procedures performed on him over the last nineteen years. Having to make the decisions by myself was an indescribable burden. I hold no judgment about what others do. I had said "yes" to every treatment needed so far, even though by signing the directive I had declared that I wouldn't. If only he could tell me what he wanted. I would give anything to know that.

Wow, was this kid tough! He finally responded to the treatments and got better. What a will to live he had. That was how I choose to rationalize the questionable decisions I made that had gotten us so far.

That last round fought in his battle to live had drained me completely. It was time to get away for a few days.

Montana is the fourth largest state geographically with many very diverse ecosystems. My fourteen-year-old grandson and I took a road trip to do some exploring. It was not lost on me that he was the same age as Scott had been when he had his accident.

If you divide Montana into thirds, approximately one third lies west of the Continental Divide and two thirds lies east. The two sides couldn't be more different, though they are equally beautiful in their own ways. The landscape of Northwest Montana, where we live, is very much like the Pacific Northwest. It's very dramatic, with craggy mountain peaks towering above tightly packed forests with diverse trees, along with abundant water in both rivers and lakes. Valleys are narrow and fertile, and lushly filled with vibrantly colored wildflowers in the spring. Although Northwest Montana looks a lot like the Pacific Northwest, it is much colder. Our winters almost always bring a few days and nights that are well below zero. Eastern Montana is where the mercury really drops and stays down for long periods. There's a lot of prairie land east of the Divide, and dry land wheat farming is big business. The mountain ranges are lower and softer looking and trees are much more scattered. The western side boasts the Flathead River, but the east side has the mighty Missouri River, and that was where we were bound. It is a long, fairly flat, and low-traffic drive from East Glacier National Park to the small city of Great Falls. It was country perfectly suited to practicing young driving skills, and my grandson was in his finest hour when I let him do so on this quiet highway. Scott would have been thrilled, too. He was quite an accomplished driver of many vehicles by age twelve, but driving was not permitted on the insanely busy highways of California. These two boys would have clicked. My oldest and fatherless grandson would have had a good male role model in his Uncle Scott. If only. We had a great week, checking out museums and galleries, kayaking, and playing lots of cribbage. I am grateful for all the memories with that grandson.

I was never a big television viewer, but most mornings I flipped it on just to check and see if the world had ended overnight. On September 11, it looked like it might have. The screen greeted me with images of airplanes flying into buildings that totally collapsed not long after being crashed into. It seemed that New York City had suffered a terrorist attack. It was a Tuesday, a reading and visiting day at the Manor. As everyone was glued to the news, I tried to explain to Scott what had happened. By mid-day, the government had declared that the atrocity had been committed by an infamous terrorist group. "Wow," I marveled to Scott. "An organization, not another country, wants to start a war with the United States. Not being able to point to a spot on the map and say THEY did it is quite incomprehensible. So governments and countries aren't the only warmongers, it seems." The images on television continued, with high drama and heartbreaking stories. "Now phones are very small and portable," I informed Scott. "Most everyone has what's called a cell phone in their pocket or purse at all times. Lots of people who were in the buildings that were struck, but not yet destroyed, called their loved ones to say their goodbyes." My heart was so heavy telling Scott about it that I finally had to stop. Was he thinking NO, don't stop, or enough already, or were there no thoughts or comprehension at all? I wasn't sure I would ever know the answer to that question, but I wanted to think my constant babbling fed his need to know, on some level, what was going on in the world.

As the New Year's bell tolled and this chapter drifted into yet another, I thanked my lucky stars that my daughter had been sober for a year and a half.
YEAR #21 2002

Scott had now survived for twenty years, had beaten all the odds, and we were amazingly still counting.

For twenty years, starting from the very first night of his accident, my heart had skipped a beat whenever the phone rang. For twenty years, I had dreaded and expected a call from his caregivers telling me that he had died. I knew for sure that call was coming, but not when. After those long years of his suffering, my wish had become that when his time came, he just would go to sleep and not wake up. It would be peaceful and sad, and it would be over. I wasn't sure when I made the transition of wanting him not to die no matter what, to knowing that he should. Watching him suffer year after year and always bravely hanging in there, tolerating all the routine infections that made him even more miserable, made me wonder how much longer I could go on. At fifty-six I was not a girl anymore. Having been stressed out at Mach 1 for twenty years had taken some toll. My friends often asked me how I was holding up. "With great difficulty," I would reply. It had been an enormous undertaking to stay semi-sane and healthy.

This year, I realized I was in some kind of survival contest. I couldn't die first. He needed me. Who would take care of him? I was all he had.

After twenty years, my memory was fading. Neither my mental memory nor my cellular one could remember what my life was like "before". For twenty years, I'd watched his body go from a healthy, strong, vital boy's to a bag of bones hung together with useless and disfigured muscles damaged by contractures that were only getting worse. But still he hung in there, amazingly.

Because of the contractures that pulled his muscles in knots and curled his body forward into an almost fetal position, he couldn't sit on the riding barrel anymore. He did get to tag along to horse therapy in a spectator role. It seemed like he enjoyed the barn smells and the camaraderie of the raucous male voices constantly cracking jokes, which was reason enough to keep him in the program.

Coping and fatigue were defining my life. It was becoming increasingly difficult for me to want to leave my beautiful property. My slice of heaven nourished every fiber of my being, and sometimes I spent days at a time there without leaving. I had to work still, but I held the dream of retirement and just being.

Another dream I held was that if I ever won the lottery I would take up daily massages. One hour a month was just not long enough. As a present to myself on my birthday I started booking my monthly appointments for an hour and a half. I found that when I had an hour massage, it took the first half hour just to relax, and then I would start worrying that the next half hour would be over at any minute. But ah, in an hour and a half I felt transported to the land of no time or cares, just sheer indulgence.

Real estate had been a part of my life since I was nineteen. That was when my daughter's father and I had bought our first house. As a career, it was fun "before" but now it was simply a means to an end. I needed a "leave it all at the end of the day" career, like a secretary or a bookkeeper. The responsibility of working with people's life savings was high stress all the time. Transactions always seemed to bring out the worst in everyone – sellers, buyers, lenders, and real estate brokers. It was always about money, an always contentious issue.

I made the necessary decision to boost my income by renting rooms out nightly in my house. In a burst of creative energy, I obtained a Bed and Breakfast license from the county. Renting rooms out to people from all over the world that I never would have met otherwise was fun and paid some bills, but I quickly realized I couldn't live under the same roof as my guests. The stress that came from having strangers occupying the same space was not serving me well. I needed my privacy and peace. My great idea had probably not been that well thought out. My Bed and Breakfast brainstorm now led to another building project. The finished shop that we had camped out in over the years had sixteen-foot ceilings. It only took six weeks to convert half of the upper space into a very sweet seven-hundred square foot guest apartment. I would be the guest. When the carpenter cut out the large window openings, I was thrilled to have a bird's eye view of the lake, mountains, and trees. All my life I had dreamed of living in a tree house. This was pretty darn close.

When fall came, after a busy real estate and Bed and Breakfast summer, Scott had more infections. The small opening on the soft spot at the base of his skull was draining more fluid. Low grade fevers persisted, as did the drainage, even after several round of antibiotics. His general doctor decided that Scott needed to be seen by a neurologist. I can't remember the specialist's name but I will never forget how I felt when this very young-looking guy wearing bright neon tennis shoes introduced himself. Wow...I was really getting old. I hoped that because of his age he would be up on all the latest discoveries.

How does one explain twenty years in one quick doctor's office visit? After my summation, the doctor asked me what the helicopter blade had been made of. If it was titanium, Scott could still have a chip of it inside him. Titanium was not compatible with an MRI scan. This MRI scan was a newer type, different than he had ever had before, and it was affected adversely by certain substances. Scott needed to have an MRI before any diagnosis could be made of his weeping scalp. The young doctor advised me to call Scott's father to find out the metal content of the blade, and then get back to him. On the hour or so drive home in the Manor van with Scott, I was grateful to feel myself leaving my body. It is hard to explain the terror I was gripped by at the mere thought of dialing that SOB's phone number, the number that at one time had been mine, too.

Once again, what to do? Should Scott be treated according to the medical directive that I signed for him, which stipulated I do nothing, or should I call because he was obviously suffering? It didn't take long to realize that of course I had to call. Scott needed the scan before any other decisions could be made. Decision fatigue was crippling me.

The next day I called Scott's father. He answered on the second ring. My heart skipped a beat as I quickly explained the reason for my call. "No," was his short answer, "the blade was made of stainless steel." After a very long and awkward silence I ended up just saying goodbye.

For at least an hour after that non-conversation, I beat the mattress with my fists and screamed until my throat was sore and hoarse. Following Elisabeth's advice to externalize my feelings reminded me of something else she told me. She said that inside EVERYONE there was a Hitler and a Mother Teresa. I wasn't accusing Scott's father of evil, but Hitler must have had the same lack of conscience and empathy that Scott's father exhibited toward his son and me. He certainly wasn't in touch with his Mother Teresa.

Scott's subsequent MRI didn't reveal much. The neurologist confessed he was out of his league and suggested I take Scott to the big hospital in Seattle to be further evaluated and most likely operated on. On the ride back to the Manor that day in the van, I decided the line needed to be drawn. With a heavy heart, I advised the Manor staff that I was not going to be pursing further options. "What would be, would be" was my comfort level. I told the staff to just keep Scott out of pain, and I didn't care how they did it.

Over the next couple of months, several other holes opened in his scalp, all oozing at various levels. All we could do was to keep him clean and medicated.

My daughter had been sober for two years and was doing well with work and family. They had rented houses for years, never really feeling settled in any one of them. I'd had a good year, workwise, and I offered to make the down payment on a rundown house in town that they could work on and call their own. I was happy for all of us when they moved in just before the holidays. She insisted on celebrating the holidays at their new digs, and for that I was very grateful.

YEAR #22 2003

With another turn of the calendar page and the weather turning frigid and gray, I yearned for an escape, but thick fluid kept pouring from the back of Scott's head. One of the holes seemed to have enlarged almost to the size of a pea, and it appeared that something solid was emerging out of it. It was both gross and fascinating. A tropical escape was not an option for me.

One morning in early February, I got a call from the Manor. The night before, the largest hole in his head had opened further and revealed a gooey piece of material protruding from it. They didn't know whether to tug on it or cut it off. They tugged. What emerged from the hole was a substantial piece of gauze. Did I want them to save it for me to see? "Yes," I answered. "I'll be right there." It was indeed substantial: a foot-long remnant of a gooey gauzy mesh material. My stomach turned and I felt my legs buckling.

Research revealed that the gauze had been placed there by the surgeon as an interim measure twenty years ago to literally hold Scott's remaining brains in his head. Since his life lasted longer than could ever have been imagined, eventually it got infected. Scott's constitution was still strong enough to expel it. Amazing! This guy was as tough as they came.

With that mystery solved, the holes in his skull closed up and healed in a matter of weeks. So the problem had solved itself and didn't call for any further decisions from me. I thanked the powers that be for that one.

I could now make the getaway I so desperately needed. I spent the whole month of March in Hawaii celebrating my birthday and avoiding Scott's. It was so nurturing to be wrapped in the bosom of my small and far-flung family. Sweet sea fragrances filled my senses and the delicate ono fish filled my belly, and finally I could breathe deeply.

Because I had made so many trips to Hawaii, I thought it no longer held any surprises. I was very excited to have my brother announce that he'd made plans for us to drive to the other side of the island to experience what he claimed was the ultimate snorkeling opportunity. We spent three heavenly days on the unsettled volcano side of the island, where warm pools of water poked through the lava and offered an amazing and unique variety of aquatic life. The biggest of these pools were where the lava met the ocean. The fresh and salt waters mixed and formed warm ponds so large they could be snorkeled in. Mingling with whole schools of brightly colored tropical fish living in the coral formations that ranged from caves to underwater canyons of every iridescent shade in the color spectrum was a blissful overload for the senses.

Whenever I return from a trip, I always find myself holding my breath as the plane lands, not knowing how everyone fared while I was recuperating. What a relief to find that all was well, from Scott's improved condition to my still sober daughter, and including the gal who had successfully run my B & B in my absence. I exhaled.

Although I was feeling a small sense of peace, the world was not. There was no television where I had made my escape. I was horrified and dismayed to find out that while I was floating my days away, the United States had invaded Iraq. I began trying to explain to Scott how and why we found ourselves fighting in Iraq for the second time since he'd had his accident. "It seems that this time there was even less provocation than the first time," I told him. "In fact the U.S. leaders, who were the same cast of characters as the first invasion, couldn't really make a case for war at all except for some unreliable speculations. Almost every other country was against the idea, but I think our leaders just couldn't pass up another oil grab. Since you had your accident," I went on, "our country has been headed in a very destructive direction." I often wondered what he would have felt his duties were, had he not had his accident.

"Do you remember the solar hot water panels we had installed on our house?" I asked him. "Remember how well they had worked in 1977? You and your sister were pretty extravagant with your water usage in those days, but those roof-mounted panels handled half-hour showers with ease." With that innovation, I had thought at the time that sustainable non-polluting energy independence was surely right around the corner. "Over twenty-five years later, we are closer to drowning in a pool of oil than ever. Solar is out, oil is still in," I lamented.

I continued to imagine that Scott would have grown up inheriting the sense of social justice that the rest of my family had always demonstrated and that he would also be involved in advancing humanity, not annihilating it. Another "what if" on my mind.

Toward the beginning of summer, I was in need of another short respite and took my oldest and youngest grandsons on a four-day Montana road trip. We covered ground on the western side of the state with stops at a Mule Days festival, tours of the Old Deer Lodge prison, and visits to ghost towns. We had a blast.

As the years passed, my life seemed to be defined by the meltdowns I suffered in each one. I saw how the meltdowns mostly coincided with a holiday or celebration. For some reason Independence Day was sometimes one of them. Maybe it was the memories of long ago when we were a functioning family of four that spent several Independence Days at large family reunions on Scott's father's side. The celebrations were filled with the predictable and comforting trappings of burgers and dogs on the grill, and the clanking sounds of horseshoes over the droning of many voices, occasionally pierced by bursts of happy uproars of laughter. I held those memories dear.

As the days got shorter and the shadows longer, Scott and I made the best of every moment we could still spend outside. When we made our outdoor excursions, we were almost always accompanied by a resident my age who had been disabled by a stroke in her early fifties. Living alone or with family wasn't an option for her, even though she managed many tasks quite well. When we walked, she did too, her slow gait the perfect pace for me pushing a wheelchair on the gravelly road. She was known as the "SKIP-BO Queen" of the Manor. At some point in our visit, she would ask if we wanted to play SKIP-BO, and we (with me answering for Scott) always said yes. Now, this is a simple card game, appropriate for ages five and up, and I am an experienced card shark thanks to my grandparents, but I'll be darned if I could ever beat her more than one game in ten. That place in her mind was still as strong as a steel trap. She regularly beat the pants off everyone.

On my ongoing quest to eliminate what stress I was in control of, I left my small office in the old hotel building in town and moved my real estate business home again. Not keeping regular office hours was a small burden off my shoulders. Since I had moved into my small guest apartment, there wasn't any room to set up shop, so I hired someone to wall off a space downstairs to serve that function.

On one Tuesday morning when I showed up for "story time" at the Manor, I found that Scott's long-term roommate had died the day before. People check in to nursing homes and die, but it was always a shock to me when I would come through the Manor doors and see the familiar memorial table set with photos and sympathy cards. I thought Scott would miss him. Even though his buddy wasn't mobile and had long ago lost his real voice to multiple sclerosis, he was company for Scott. I would miss the smile I always got from him when I walked into their room. MS is a mysterious and tragic disease. It affects everyone differently, and yet in time the end is the same. There were several residents with MS living at the Manor, mainly women in the prime of their lives. It was heartbreaking to watch simple functions that I took totally for granted being performed by them with great difficulty. There were a lot of sad stories at the Manor.

Ever since I became a mother at the tender age of seventeen, I had taken power naps in the late afternoons. I considered it great skill inherited from both of my parents. For twenty minutes, I close my eyes and go into kind of a suspended light sleeping state. When my eyes pop open after that short nap, I am good to go.

But one afternoon as Thanksgiving drew near, I lay down and woke up shivering and covered in sweat four hours later. Flu, I thought. Damn. Days went by while I dragged myself from bed to couch to bed with a steady fever of 103 degrees, now accompanied by a painful cough. During one prolonged coughing fit, something snapped in my back. I was in agony. Lots of folks have bad backs, including both my brothers and father. While I had sympathized, I had never known just how miserable it made them. Every time I moved or tried to sit or lie down, it felt like I was being stabbed by a sharp object. Sleeping was impossible for a couple of long days and nights. All I could do was slowly pace around my tiny abode hoping for relief. When friends called after a week, to see how I was doing, I could only cry. I told myself that the next day would be better, but it wasn't. After over three weeks of thinking that I didn't know anyone could feel so crappy and not die, I went to a physician, who pronounced me to be suffering an extra bad case of the flu. Something told me there were other problems going on, too.

Christmas came and went, and I was still barely crawling around my apartment, existing pretty much on smoothies and energy bars although at last I could sleep. I slept so deeply that I started having hallucinations. Several times I dreamed of people walking around my house, but found myself unable to speak and ask who was there. It was terrifying. I suspected that the dreams were brought on by my illness.

Sometime after Christmas, my fever broke in several massive sweating episodes. I started to regroup. Sleep now came with vivid dreams that were almost Dickensian, like something from his famous Christmas Carol. Devastating dreams of the past occupied what seemed like endless hours until I would awake with great relief. Next came dreams of the very hopeless present I occupied; tears awoke me from those. Finally, the dreams of the future brought the knowledge that I would die soon if I couldn't accept what had happened to my son. Acceptance, ah yes, well. It wasn't as if I hadn't been pursuing that for over twenty years. It wasn't something that would just sweep over me and I would be at peace. I'd tried everything already. I felt clueless, sad, and utterly defeated.
YEAR #23 2004

The New Year found me still wobbly but on my feet. I don't ever want to be that sick again. When I finally had enough energy to go see Scott, over a month had passed.

The "story time" group had others read to them while I wasn't there, but they always saved the book we'd been reading together until my return. Over the years, the size of the group had constantly changed. New residents came and old ones left. Mainly they died.

Two of my long-term story timers were actually a couple. They met at the Manor, married at the Manor, and shared a room there. Men were at a premium there, as in all long-term care facilities. The man in that couple was very well protected by his new bride from any other womanly advances. She was a Southern belle who didn't mince words. We had spent most Tuesday mornings together for the last couple of years, so I was shocked to have her accuse me of trying to steal her man away from her. I had given him a quick hug in the dining room one afternoon, and she had proceeded to make quite a scene, calling me a hussy and banning me from their table. It was at once embarrassing and hilarious. I tried to keep a straight face as I apologized but she was having none of it. She pouted about it for the next few Tuesdays but they still came to "story time". Scott bore silent witness to a lot of drama at the Manor. I hope he got a kick out of that one.

This year brought my fifty-ninth birthday. Boy, oh boy, was I ever feeling every bit of what I considered to be a VERY big number. In part, my sense of accelerated aging was because even four months after the onset of whatever kind of awful affliction I had contracted, I was still not even close to being back to my old self. I looked and felt much older since then. Often I got a very unpleasant, distinct metallic taste in my mouth that was unidentifiable, and that was a big worry. Not right, and not good to be sure. It was the end of my fifties. Getting so sick and not bouncing back made me feel vulnerable. I couldn't help but wonder if my "feeling good" years were behind me. I also began to increasingly fear that Scott would outlive me, an unthinkable prospect.

In May, I lost my faithful canine companion of fourteen years. She was a lab mix, and before she turned two there had been many times I was ready to put her on the grill. She had been a maniacal chewer of everything, including clothes, phones, plants, and wood of any kind, including my front door frame. "Hang in there," other lab owners had encouraged me. "She'll change when she's two," they promised. Almost as if she had been programmed, she became my perfectly well-mannered pal on her second birthday. And now, she was gone too, and all I had left of her were the many awesome memories of her and my horse and me escaping into the nearby wilderness. I hadn't slept alone for fourteen years. Now who was going to take care of me?

My daughter and I were very lucky to have another mother/daughter duo from our beach years that we had been best buddies with for over thirty years. The mother had visited me often since I had flown the coop to Montana. She loved it here too, so much so that she bought a lot on the same lake, and this year her architect daughter had started designing a sweet cabin for it. This was a dream come true for me. Friends are what had sustained me these many long years. There weren't many that knew Scott "before", and she was one. She'd known him since he was two years old.

In one of her many earlier incarnations, she had owned a catering business. Because Scott always had his eye on the buck, he had been her sous chef from time to time. She holds good memories of their times together. Those memories took me into the "what if" zone... maybe he would have grown up to be an applauded chef of some renown; he'd always liked cooking. Or maybe his destiny would have been in the farming business he had grown up in. STOP. Why do I do this to myself?

My re-located beach buddy and I had shared many legendary adventures over the years. We both loved horses, although she had never owned one. That summer, I offered to care take of a handsome big black Tennessee Walker so that my horse could enjoy a stable mate and my friend would have a horse to ride. That riding season, my friend and I made several mini-escapes into the high country. Each one was like a healing tonic for me.

Whale Lake was not easy to get to and was even more special because of its remoteness. My sanity was kept and memories were etched while riding on the narrow switchback trails that looked out onto other majestic mountain ranges as far as one could see. Near the top of the trail coming up the ridgeline, the rock paths give way to verdant flower-filled meadows with water trickling from the very smallest of crevices. The Whitefish Divide Trail offered vistas usually only seen in postcards. Looking north were the unsurpassed Canadian Rockies. Glacier National Park was visible to the not-so-distant east, with other splendors spreading out in one awe-inspiring gorgeous scene after another.

Whale Lake is carved out of a small rock basin. Its overgrown brushy trail can be walked around easily in less than an hour. Our wienie roasts always lasted longer. Another regular riding companion was a third generation local gal. She was one of the nurses at the Manor, and we connected right away because of our love of horses and wild places. When it came to making a campfire, it was a pleasure to let her do what she did best. She could get a blaze going in the wettest conditions. I had trouble making any fire at all unless I had at least one full edition of the Sunday New York Times to work with. In addition, I deferred to her wienie stick advice: "pick a green one."

On August 24, my mentor Elisabeth Kubler-Ross died after suffering a series of strokes in 1995. She truly was my hero, the best I'd had since Hopalong Cassidy when I was five, and a lifesaver for me to be sure. She changed the thinking of the world by making some sense of the enormous grief we always feel after a loss. In her famous five stages of grief, I was still dealing with the fourth stage, depression, and I couldn't move past that. The fifth stage, acceptance, seemed simply unattainable.

Before Elisabeth made her mark, most doctors, especially the ones dealing regularly with terminal conditions, were not prepared for failure, aka death. Elisabeth made the medical community see that there was both success and failure in dying. While puffing up over success/survival felt great, the failure/death component was still going to happen. Elisabeth saw American doctors woefully unprepared to help patients or their loved ones when death inevitably occurred. She found that not only did terminally ill patients want to talk about death, but in fact not being able to converse about tough subjects at the end made death harder for everyone. She opened the dialog between patients, especially young ones, parents, and doctors. She found that it was much easier for a person to die in peace if they didn't leave behind any "unfinished business." An ideal death goal would be to have none of that left, to get it all out. She helped people to see they still had choices, even at the end, and to hold fast and celebrate those choices. That was her biggest gift to me. Elisabeth saved my life during those first years, and some small bits of her powerful wisdom were now a part of me. I will always be eternally grateful for having had her in my life.

It was getting harder and harder to go to the Manor during the holidays. The first "story time" Tuesday of December was a chapter in our current pioneer story of a woman losing a child and the grief it brought. I barely made it through that reading session without having a complete meltdown, which I didn't like to have happen in front of Scott or the other residents.

The mere thought of seeing Scott during the holidays left me shaky and weak in the knees, and the guilt I carried around because of that was almost crippling. Why couldn't I just suck it up and do it for him? I asked myself. But answers didn't come, just more questions. Once again, a hero came to my rescue. The brilliant and endearing social worker who had been assigned to us almost twenty years ago was still a long distance support system for us. I wrote to him about my dilemma. His sage advice was not to push any further into the state of discomfort than was necessary. "Cut yourself some slack and stop feeling like you have to keep on performing duties that make your already grief-filled life worse," he wrote back right away. He was also incredulous that Scott was still living after all these years. He commented that it was rather astonishing how Scott had beaten all the odds. For the first time in many years, we didn't read The Grinch on Christmas Eve. It was all about trade-offs: trading old, worn-out memories of happiness that would never be again for the reality that I was not Superwoman, and I had to set boundaries for myself for my own survival. After all these years, I saw how my own survival had to be my main focus. I couldn't die before Scott did.

Ending the year on a positive note was a worthy goal, so I focused on the joy brought by seeing my daughter put a four-year notch in her sobriety belt.

YEAR #24 2005

Twenty-three years and counting. The times are marked off in my mind like ones that prisoners keep track of by way of scratching their days, weeks, months, and years on the walls that enclose them.

January brought a typical weather pattern. It was well below zero for ten days and then a jet stream or some such phenomenon flipped, and the winds started blowing warm. Within hours, the thermometer sprang from the minus zone to plus fifty, and our gorgeous white winter wonderland began melting almost as fast as the Wicked Witch in The Wizard of Oz. By morning it still looked white, but the snow on the roads had become the consistency of cooked oatmeal over a base of solid ice.

It was the worst driving scenario for this California gal, one to be avoided at all costs, except that I had committed to take my oldest grandson to a badly needed dentist appointment that day. His appointment was in a town seventy miles away on the winding road that ran alongside the lake. It was a gorgeous drive under almost any other conditions, but the conditions that day were treacherous. We crawled at a snail's pace before dawn and arrived at the appointment safely. On the return trip, it had started raining and it was already starting to get dark. My old front-wheel-drive Mazda was good in the snow, but the even mushier mess on the return trip proved to be too much even for her. She started spinning in circles on the completely level two-lane road, crossed over the center line and was headed straight for the embankment that led sharply down to the lake. I started shrieking and at once lost every memory of what I had been told to do in Montana winter driving conditions. All I could do was just hang on, screaming expletives a grandmother shouldn't be spewing forth in front of her teenage grandson. When the car finally stopped at what seemed like inches from the edge of the cliff, my whole body had been reduced to a sobbing trembling puddle. "Wow, we did four 360s," my grandson marveled. As he patted me on the back he said consolingly, "It's OK, TuTu, it's OK." Immediately I thought: That's just what Scott would have said.

The males in my family all seemed to be big risk takers, or maybe it was just a guy thing in general. I do know that thrill seeking was a point of contention between Scott's father and me when I felt that either of them was taking an excessive risk. One huge disagreement we had was about wearing helmets on motorcycles and bicycles. Scott's father had been forced to wear one when professionally racing, but seldom wore one during short pleasure rides. Even back then, I was incredulous that it would even be an issue, but I certainly had no control over what he did. Scott was another story. I told Scott that if I ever saw him riding his motorcycle without his helmet there would be very dire consequences, even with a first offense. And so it was that Scott dodged an enormous bullet late one afternoon riding less than a mile from home on a dirt road during a rainstorm.

He'd gone to visit a friend who lived a short ride up the hill. While he was there, it had started raining hard. I called the friend's house to tell Scott that our dinner was almost ready. When he wasn't home in the next fifteen minutes, I knew something was wrong. It was raining even harder. I called his father at his house further up the road for help in finding him. After searching a short while, we found Scott barely conscious under a tree that he had hit when he skidded off the wet road through a barbed wire fence into an orange grove. I breathed a big sigh of relief when I saw he had his helmet on. Later I discovered a substantial dent in the helmet. If he hadn't been wearing it, he might have met his end right there. Needless to say, the helmet discussion between his father and me was closed.

After that harrowing trip to the dentist, I was ready to throw my Power Woman badge away. I had been given that nickname at some point by a friend who felt that I had earned a superhero designation after keeping on so very long. At first it was fun to use that term, but it became a label I was exhausted from trying to live up to. I was tired of being strong. I was tired of handling crisis after crisis by myself. I was just so goddamned tired of carrying the load. If I could only lay it down for just one year, just one lousy year, then maybe I could carry on. This Power Woman needed a long sabbatical.

Spring brought relief from ice and snow, and my sixtieth birthday. It was my most memorable. At least forty wonderful, wild, crazy, and irreplaceable friends participated in a surprise party for me that definitely took me by surprise! It was a great way to officially usher in a new decade.

Traditionally, the annual flower beds got planted the week before Memorial Day at the Manor. Planting flowers was right up my alley and gave Scott and me as well as other volunteers and residents an opportunity to spend a few hours outdoors together enjoying the camaraderie that a communal planting project brings. Even Scott's nephews looked forward to the task. I always brought at least one of them to help. Years before our arrival at the Manor, someone had attached long wooden flower boxes to the outer side of all the hand railings alongside the sidewalks that encircled the buildings. Each year, a local grower supplied the seedlings that provided colorful displays to be admired all the way into early fall. Checking the condition of our flowering gardens was something Scott and I did with each outdoor walkabout all summer.

It's harder in our rugged northwest corner of the state to spend time recreating outdoors if you are disabled in any way. The Manor does a good job of scheduling adventures for the residents during our short span of warmth. This year, there was a men's fishing outing to the crown jewel of our local lakes. It is quite large by Montana standards, enjoys crystal-clear glacier-blue water and, except for a scant twenty or thirty residences, is almost entirely surrounded by national forest. There was a church camp with a dock on one end and that was our destination. A regular volunteer at the Manor had donated his pontoon boat, which had enough room on deck to accommodate twelve walk-on guests and two wheelchairs. Scott was one of the lucky draws for a wheelchair slot and I accompanied him. Getting everyone on board from the narrow wooden dock was no small feat. The wheelchairs needed at least four people to heave them on deck. The better part of an hour was spent readying the crew, and finally we set off. The fishing poles were then baited and vigorously flung hither and yon by eager geezers with great expectations. The look on Scott's face was one of pure joy as I described the scene while the small vessel bobbed and swayed under us. A few fish were caught and exclaimed over with much excitement. A couple of hours passed. As the wind picked up, we started really rocking and rolling. We headed for shore. To say the weather in Montana is unpredictable is an understatement. I'd seen it go from sandals to Sorels in less than a two-hour span. It was pouring rain by the time we returned to the camp, but despite the weather we were greeted with the standard and welcome picnic fare of burgers, wienies, and beans. I added mustard to Scott's pureed hot dog. Sadly, I couldn't remember if he ever even liked mustard.

The summer highlights that year were five years of sobriety for my daughter, and more day-long horse escapes and kayak adventures for me.

Fall was the usual "batten down the hatches" season. Lately I'd become very aware of my physical inability to perform all the required tasks. I clearly had not healed completely from my awful previous winter illness. Crap. Some chores could slide, I told myself, they would just have to. As the days grew shorter, a story unfolded that rocked me. A good friend who had moved from here to the big city because of job challenges called to tell me about a new friend she had made. She just happened to see an ad in her newspaper about a family with a head-injured son. They were asking for volunteer help for him at home. The ad specified the need for respite care. Because she had visited Scott a couple of times while living here and was moved by his story, she answered the ad. She and the family became fast friends over the next few months. When it became apparent there was no road back for their son and that he was suffering in ways unimaginable to most of us, they felt obligated to let him go. To do so required clandestine maneuvers.

Both the state and the community they lived in would have certainly made a fuss if they hadn't surreptitiously moved him to an undisclosed location, removed his feeding tube and medications, and let nature take its course.

That decision was a case of a patient's loved ones and caretakers taking charge, not unlike Nancy Cruzan and some others. Thankfully, this sad case never made headlines. I could only imagine how hard it would be to do something like that to begin with, but the added stress of inquiries and accusations would be enough to tip anyone over. With life support withdrawn, he lived three days. For a long time, that family's hard decision plagued my mind.

I was the one who had spoken for Scott in his advance directive requesting he be a "no code". This was something else entirely. Was Scott suffering? How could he not be? But I didn't know to what degree. When was enough enough? If he could only let me know his wishes, I would be at his command. But I needed to know. I wasn't sure I could live with myself for merely surmising.

Sometimes when I'd be in so much pain I couldn't bear it, I tried to think of other ways of losing a child that might be worse than what we were going through. How do parents of murdered children carry on? Or what if your child just plain old disappeared on the way home from school without a trace? It was all too terrible to imagine, but I knew what I was living with after the loss of my child, having disappeared in an instant, and yet watching his corpse day after day after day. Losing a child in any manner is enough to make anyone go insane.

John Irving is a favorite author of mine. Sometimes it feels like he is reading or is inside my mind. A Widow for One Year was a recent addition to his large body of work. The topic was tough and resonated with me a way I'd never thought about before. In the story, a family of four was driving in the snow while on vacation and there was an accident. Both of the couple's sons were killed, aged fifteen and seventeen. As I read on, my grief for these parents tore my guts out. I imagined the loss. The couple tried to keep things together. They even had another child, but the mother couldn't deal with the hand she'd drawn. She just decided to disappear after a few years. I completely related, and I tried hard to get my mind inside hers. I failed in that regard, but found I was a bit envious that she could actually do that. I decided that the fact her husband stayed the course gave her the option she took. That was not our story. That mother knew the father would carry on without her. Our story was much more complicated.

At the end of every quarter, the Manor called all the caretakers and me together for a resident report. That caring group was always upbeat and wanted to report the smallest of positive news about Scott. It was so sweet, but anyone could see he was losing ground and wasting away. His muscle contractures were so severe that he had very little range of motion left when we tried to move his limbs. Imperceptibly slowly, his body was curling more and more into a fetal position. Bearing witness to that was ongoing torture.
YEAR #25 2006

Sometimes I would lie still for long periods of time trying to imagine what it would be like to be Scott. It was unfathomable to think I could never scratch an itch or swat a fly, and because I was blind I would be robbed of the most basic of communications. Being a prisoner inside of my body for twenty-four years was simply unimaginable, even though I had borne witness to that very horror. I didn't torture myself like that very often, but it did happen.

My sixty-first birthday greeted me with news that knocked me back on my heels. After preaching condoms and sex education to my oldest fatherless grandson since he was two, at nineteen he was going to be a father. It took me a while to process that realization alone, and then it occurred to me that it would make me a great-grandmother. Overload, overload. Escape, escape.

I felt Costa Rica calling me again. A friend and I departed on a very different trip to that tropical destination. This trip was on the economy plan. Selling real estate is a crapshoot at best. Paychecks come irregularly, sometimes months apart. Not having the security of a weekly paycheck was an uncertainty I had been willing to live with at the optimistic age of thirty-two, but at sixty-one it added another layer of stress for a rapidly aging soon-to-be great-grandmother. It was also a worry that age was limiting my physical activities. No, STOP, I told myself. I could still enjoy long walks on sandy beaches, eating lots of fresh fish and fruit, and the freedom the waves brought me when I was body surfing. At least there were some simple pleasures and skills where age didn't matter. Or so I told myself.

The short summer season in Montana always flies quickly by. The Manor residents were enthusiastic about me hosting another garden party, so I did. Speaking of simple pleasures, that was one. After work, because the days are so long in summer, there was time for a leisurely horseback ride through the woods or a kayak paddle on one of the many nearby lakes. Both of those pursuits enabled me to enjoy a mini-escape from the real world and helped me to be grateful for what I did have. At the top of that list was the chalking off of my daughter's sixth year of sobriety.

I have never been a big television fan. One thing that bugged me when I went to the Manor was the droning of televisions from every corner of every room. Scott and his roommate each had one, and I was not pleased if I walked into the room and found them both blaring conflicting nonsensical programs. I tried not to complain or be too bossy, but I knew which programs Scott liked and I had left numerous lists of his favorite shows. I knew his caregivers were all very busy, but often when they put him back in his bed they clicked the television on and left before even looking to see what was showing. It was hard to imagine he enjoyed listening to soap operas and infomercials, but I really didn't know. Like his father, Scott had been addicted to television, and maybe having anything on was better than nothing.

In the 1970s, when our then-intact family left the beach chapter of our lives to start the next chapter in the country, a "living off the land" kind of adventure, we had no utilities at all for the first few months. No power, no phone, no television. I was happy to spend that summer listening to the transistor radio for news of the outside world. Scott had hated it.

The one use for which I valued television was watching news events. During that unplugged time of our lives, one of the biggest news stories of my lifetime was about to come to an unbelievable end. Richard Nixon was the thirty-seventh president of the United States, and he had been a very bad boy. He had ordered his aides to raid the Democratic Headquarters, got caught, lied, and got caught again, and he was facing impeachment. Without admitting he'd done anything wrong, he made the right decision to resign from office. I had never been a fan of his, and I was not about to let my children and me miss witnessing him make that devastating announcement on live television. "This is history," I told them both. And so it was that we three found ourselves in the appliance department at the Sears store twenty miles away in the nearest mall watching Nixon squirm on one of showroom model televisions. It was one of those moments; you always remember where you were when a historical event happened.

In the fall, my escape from reality was a dream train trip across the country to the east coast for some leaf peeking. It was a great adventure to store away in my memory bank. Toward the end of the trip, the call came announcing the birth of my great-grandson. Even though I had known for months of his impending arrival, I couldn't quite wrap my head around it. My babies' babies were making babies! When Scott had his accident, we were two generations; now we were four. Impossible. A few nights after receiving the news that I was still trying to process, I had a very vivid dream. In the dream, I had returned home and was presented with a bundle swaddled in a large flannel receiving blanket. When I unwrapped it, I was greeted by a grinning face on a huge gingerbread cookie. I woke myself up laughing out loud. I realized how much I had been in denial about the impending sprouting of the latest branch in my family tree. It wasn't real until I held him in my arms eleven days later. I fell instantly and hopelessly in love and experienced validation that life does go on. He was here, and how I handled the situation was my choice. The look in his father's eyes told me he was in love, too. Maybe this ended the line of deadbeat dads in my family's sad history. Now my daughter was a grandmother. Didn't I just pick her up from nursery school? Scott was now a great-uncle.

That gave me the designation of Grand Poobah-TuTu. At sixty-one, I had attained a new matriarchal status, which was elevating, but not something I had actually aspired to. Being a grandmother someday is on most mothers' minds, but living to see great-grandmotherhood had never occurred to me.

The newest arrival was only two months old when the holidays once more rolled around. It felt a little lighter that year, in no small part because of him. When that new family showed up at the Christmas dinner table, I felt a small dose of grateful contentment.
YEAR #26 2007

Twenty-five years is a long time to grieve on a daily basis. It occurred to me that after all those years, I still spent a portion of each day on the all-consuming task of just trying to remain sane and healthy. I was successful in some part, because at least I was still standing. However, I would sometimes be taken off guard when that sucking in my belly brought up a sadness I had no control over. Sometimes just seeing the back of a young man's head would trigger it, and I would find myself sobbing and once again drifting into the "what ifs" that have haunted me all these years.

The loss of Scott's life was not all I was grieving. His accident robbed me of my own life's full potential. At the age of sixty-two, I still needed to hold on to some expectation of peace and happiness for myself no matter how unrealistic it seemed. Yes, I'd tried to carve out a life, but I felt handicapped, crippled, in the largest sense of the word, and my quest to overcome that feeling seemed utterly futile. In my sixty-second year, I hoped to come to an acceptance of my life being changed but not ruined. There was that word again: acceptance. Ha. Who was I kidding? Maybe there was a way to slip into it little by little.

Scott had his fortieth birthday. It was incomprehensible that he had lived that long. I'd watched my darling stud muffin teenage son grow his first whiskers, and then watched as the years rolled on and his curly mane of hair thinned to the extent that he had a noticeable bald spot and his dark hair was sprinkled liberally with gray. His once fleshy arms and legs were now skeletal and contorted permanently, making it harder and harder to dress him or get him properly and comfortably seated in his wheelchair.

On my sixty-second birthday, I was facing an unplanned forced retirement. I had been involved in the real estate business for over thirty years. I'd experienced the many hills and valleys of the economy, and I had always tried to prepare for those ups and downs. This latest valley had no equal. There was a huge decline in the prices of properties everywhere. Hundreds of thousands of Americans were losing their precious homes in foreclosures due to some very bad business practices by the banking conglomerates that control the world's finances. What a mess. My phone had stopped ringing. I was far from where I had imagined I would be back in my thirties. Ah, plans. You'd think I would have given up on those long ago.

An upside to the situation I'd found myself in was that I lived in paradise and my pleasures mostly involved things I didn't need much money to buy. I was now eligible for a Golden Age Passport. For ten bucks I bought a lifetime pass to all the national parks in the country.

Start writing Scott's story, I heard my inner voice suggest. It was time. And so I did, and while it was depressing it also felt right. It was right that his nephews and cousins would know who he was "before" he wasn't. Writing his story would help others to understand what a strong, tough guy he was and how unique he was to have survived at all, let alone this long. It was right because he couldn't tell his family how wonderful his childhood had been, filled with flying and motorcycle adventures, trips to Grandpa's rustic old Lake Arrowhead cabin on holidays and trailer trips all over the western states with his very independent and doting grandmother. It was right that the memory of him lived on in some way.

Ice is the bane of my existence in Montana. Skidding out of control in a car or falling on your butt just walking out the door is not something I want to deal with. One very cold and icy day that year I fell on the ice four times, each time landing on my right hip, back, or leg. Two of those times I even had my non-skid cleats on. The sum of the four slips pretty much crippled me and made the thirteen-hour trip to my Kona paradise more than a little bit uncomfortable. Just walking was agony. But it was heaven once I got my beat-up old bod in the warm tropical seas. Snorkeling took all the pressure off my screaming back; doing anything else was excruciating. After a couple of months, the injury still had me in chronic pain.

After all these years, you would think I'd have given up thinking that someday I would answer the phone and it would be Scott's father. Several scenarios were always conjured up, variations on the same general theme. He would first ask how his son was. Then he would ask how I was. At some point, he would apologize for having been such an ass all those years and say that now he wanted to be supportive. It was a pipe dream, but I just couldn't let it go.

Twenty-five years ago, when Scott's brain was injured, the general term for his condition was "coma". The last quarter of a century had brought about massive amounts of new information on how the brain worked and healed. Those many years ago, cassette tapes, portable audio devices, and typewriter word processors were the hot tickets. The day is drawing closer when technology will be able to probe the depths of an injured brain's thoughts and so enable communication with the catastrophically afflicted.

There were now three sub-categories of the "disorder of consciousness" designation:

Persistent Vegetative State (PVS) is defined as a condition of patients with severe brain damage in whom coma had progressed to a state of arousal without detectable awareness.

Minimally Conscious State (MCS), the newest designation, and the one about which the least was known, is described as a severely altered consciousness in which minimal but definite behavioral evidence of self or environmental awareness is demonstrated, including following simple commands occasionally. A ten-year survival rate is rare.

Locked-in syndrome is a condition in which the patient is aware and awake but unable to speak or move due to complete paralysis of nearly all the voluntary muscles in the body. Otherwise the individuals are often cognitively intact. Patients retain sensation in their bodies, but they cannot respond. Some of the luckier victims retain some control over their eye muscles, allowing them to move their eyes or blink and thus communicate. We have learned about what the condition feels like from those patients.

The most famous autobiographical account of locked-in syndrome was a best seller called The Diving Bell and The Butterfly. A French journalist named Jean-Dominique Bauby wrote it. He had suffered a stroke in his forties that affected his lower brain stem. He dictated his autobiography by blinking his eye. He likened his condition to being in an underwater, pressure-filled diving bell that held his whole body prisoner. He died fifteen months later. Locked-in syndrome can be induced by traumatic injury to the brain stem area.

It seemed to me that some version or variation of locked-in syndrome best described Scott's condition.

Scott's beloved and favorite night nurse gave me this story about him and her. She had written it down to share with others. It took place while I was away for the night.

"I was one of the registered nurses who took care of Scotty in his mother's home following his discharge from the hospital after seven months. As nurses we were trained to not become attached emotionally to our patients. This story is the reverse of that. Scotty became emotionally attached to me. I worked the four to midnight shift. When I arrived at their home one afternoon I could hear Scotty making soft crying/moaning sounds. The nurse I was relieving said he had started an hour before. During my entire shift I tried to find a source of pain but was unsuccessful. It finally occurred to me that maybe Scotty was coming out of his coma and was scared because he couldn't move or see. I pulled a chair up to his bed and sat down. I took hold of his hand and said I know why you are sad. You are finally waking up and have realized you cannot see. The moans stopped immediately. As I sat there, I told him his entire story as it was told to me. It was obvious that he was listening intently. From then on from time to time he would seem more alert. He would make what I called his 'happy sound' when he heard my voice. That was Scotty's emotional attachment to me. I took care of him in his mother's home for almost three years." I was so thankful for that woman and treasure her still.

Thanks to the information age, I was learning more and more about the progress being made in the brain injury field. As it did, I saw better where Scott fit in.

#1 He was unusual in his survival time frame.

#2 I knew that he was "in there". The more I read about locked-in syndrome, the surer I became that that was where he was living. However, that idea made me even sadder. He couldn't even blink his eyes to let me know what agony he might have been in.

The concept of locked-in syndrome resonated with me. That conclusion helped me to justify the decisions I had made about not holding to my "no code" life extension vows, a decision I had struggled with on several occasions. The condition affected voluntary muscle control. Spontaneous reactions were another thing entirely. Spontaneous reactions were not purposeful. Scott had no control over them. But from deep in his core, beyond all control, they emerged, just like in any of us. His laughter was not cognitive; neither were his moans. Even we "normal" folks have no control over spontaneous emotions. I know I can't control mine – damn if they don't show up whenever they feel like it.

My quest had now become to try and connect with one of the brain technology wizards and plead our case. Please, I would almost beg, let me know if he's in there, what it's like and what he needs. Not a small request, I understood.

My only uncle died this year after a long battle with cancer that he had fought with style and grace. My already-small family had shrunk further. Now it was just me and my two far-flung brothers.

I lost a best old high school pal to cancer this year, too. As familiar as I'd become with death, it came as a surprise when it claimed the friend who had tutored me in the fine art of applying eyeliner in the ninth grade.

Summer marked seven years of sobriety for my daughter. Again I bowed my head in gratitude.

It was at our Christmas gathering that she informed me that I was to become a great-grandmother for the second time. Number one was only fourteen months old. At that point, I could only sigh at the lack of good sense I had failed to impress on my progeny.
YEAR #27 2008

Each New Year's Day felt like I had crossed over a dark divide. Somehow I would emerge to face the next year. I must have programmed myself to just get through one twelve-month period at a time. I would push, struggle, and fake my way through it almost to the end, and then predictably the load would get too heavy and I would break, only to regroup as the annual calendar page turned. Once again, I rose from the depths to face our twenty-sixth year, a year that could only be described as torture for all of us. I would have confessed to almost anything to have that torture stop. There were no escapes this winter. My personal financial recession had set in and I was treading hard to keep my head above water. It was a very long and dreary season.

Spring brought several firsts, amongst which were my second great-grandson being born and my youngest grandson becoming a teenager.

Tuesdays at the Manor continued on, but there were times that I would get there and Scott would not be up in his wheelchair. The time he spent resting in bed was getting more frequent. He was fighting more infections of one kind or another, constantly it seemed, and getting visibly frailer. Even when he couldn't join us for "story time" my other groupies still met around the table in the activities room and awaited my arrival. I wish that I had written a list of all the books we'd read over the last twelve years. For almost two years now, we had been on a Louis L'Amour kick. Someone had donated his complete works to the Manor, and we'd chalked off four or five of them. Even though most story lines were predictable, we all still loved the lonely cowboy, the shootouts, and the "eventually getting the girl" plots.

The days that Scott was unable to get up made me very sad. Sitting on the edge of his bed in his room just blabbing away to him was depressing. I know he would have enjoyed a stroll, even just up and down the halls, so much more. Lying there without the stimulation of outside interactions must be the most boring thing in the world to have to endure, and the other residents missed his presence in the great room when he wasn't there. When he was up, he was fawned over by all the geezers. In bed, his interactions were limited to care by the staff.

As the years ticked by, I found myself feeling increasingly resentful towards Scott's father for his abandonment of us. Sometimes the feelings and images were scary. I found myself imagining how it would feel to drive a lance clear through a heart that was as hardened and cold as his. It was becoming easier for me to see how things like murder happened.

My own health was becoming a bigger concern for me. All these years of stress were starting to rob me of my vitality. My one short week-long summer escape this year was to Yellowstone National Park. Camping and hiking had always been a trip to the land of rejuvenation for me, but this trip had the opposite result.

Before leaving, my friend, whose camper we were traveling in, had cleaned and heavily sprayed the vehicle from top to bottom for bugs. After only a few minutes of being inside loading up gear I felt woozy. When my throat and chest started hurting, I had to get out and go lie down. The plan was to leave that afternoon, but I couldn't do it. My body felt weakened to the extent that it wasn't until the next morning that I could manage to get up and get aboard. During the whole drive, I felt shaky and light headed, but once camp was made and dinner enjoyed I seemed okay, although very tired.

The next day included plans to make a four-mile hike to a waterfall. It was uphill, but my body had never before refused to cooperate in trudging easily along. After the first mile or so, my legs felt heavy, as if weights had been attached to my ankles. By the third mile, each step was like wading through water, and my hair, face, and shirt were dripping with sweat. This wasn't right, I thought. It should have been a breeze. My friend offered to stop and turn back, but I was determined. When we reached the falls, I literally collapsed with a thud on the ground and started sobbing uncontrollably. My poor friend was completely befuddled. The more he consoled me, the harder I cried, and I really didn't know why. It took a few days after returning from that trip to realize that it was possible that my athletic days were behind me. My body was breaking down, plain and simple, and I was terrified. It couldn't fail me now, I thought. But it was failing.

The short summer flew by. Before I knew it, I was explaining the significance of the latest presidential election to Scott as I pushed him up and down the hallways. "We, the people of the United States of America, have actually elected a black man to be our president. He is hapa-haole. Do you remember what that means, Scott? In Hawaiian, it means he is half white. Isn't that amazing, bud? Our new president's skin is very brown, not white though, and he has an even darker-skinned black wife and two beautiful black daughters." I had become enamored of Obama several years earlier when he'd made an unforgettable speech at the previous Democratic convention. "Never in my wildest dreams did I ever think I would live to see anyone but a white man become the leader of our country. History has been made," I told Scott. And while Montana, a state of almost zero ethnic diversity, didn't give their electoral votes to him, the other states had elected this man for his intellect and tenacity, not for his gender, color, money, or family position. To re-enforce the significance of this to Scott, I reconstructed for him the Civil Rights Movement that I had lived through not that many years before.

"In the 1960s, the very decade when you were born," I told him, "black people couldn't eat at the same restaurants, drink from the same fountains, or sit in the same section of the bus as white people in the south. And while white supremacy was still king in some states, others had conceded that color didn't matter as much as brains and common sense. Just think," I speculated enthusiastically, "maybe my real estate career isn't doomed. Maybe our country will emerge triumphant. The previous administration dragged us into two unpopular and, in my opinion, illegal wars, and then they used the country's credit card to pay for it. They even gave favors to their rich friends who pulled us into an apparently bottomless economic hole and caused the huge financial mess that ended jobs like mine, and left people homeless. Maybe Obama will be our knight in shining armor," I naively went on, "and make our country the way it was in the memories of my own 'Happy Days' upbringing." I could almost hear Scott thinking, Yeah, right, mom, as I carried on my usual one-way world-reporting conversation.

With Christmas came the news that I was going to be a great-grandmother times three. My first thought was that I needed to step up to the blackboard and write I AM NOT IN CONTROL one hundred times. I knew that, I really did, but as the ipso facto matriarch of this hapless family, I felt it was my duty to keep trying to steer all my wayward ships into a safe and meaningful harbor. But alas, I AM NOT IN CONTROL!

As always, at the end of the year I was tired of being responsible and wanting nothing more than to slip into a "so what, who cares?" state of reprieve from reality.
YEAR #28 2009

Passing the open windows got a lot harder.

Shortly after the first of the year, I received a forwarded e-mail message from a friend who knew someone who still lived in the same town my family once had. This friend of a friend had read Scott's father's obituary in the local newspaper and wondered if I knew he had died. The e-mail said that he had died of cancer. As the years had gone by, my thought had become: the worse his death, the better. My wall of hatred and bitterness had grown so huge over the years that I was blindsided by the feelings that surfaced. At one time, we had been in love. We had some wonderful times, and my brain quickly took me on a spin down memory lane that brought the tears flowing. Really? Tears for him after all these years?

The first person I called to commiserate with was the dear friend who had introduced us. As I sobbed away, she said, "I hope you're mourning the loss of Scott's father and all of that story, and that you're not crying for him as a person." She reminded me, "He was not a man of much substance, Carol, and he repeatedly let down every person in his life that ever cared about him."

She was right of course, but I was also grieving the ridiculous notion of him someday making amends to us. Now I didn't need to hold that completely absurd image in my already-full brain. There were going to be no "Kumbaya" moments. Finding out about his death through a forwarded message and not from his wife was another low blow, and it proved that they never thought of us at all.

I wasn't able to bring myself to tell Scott. It occurred to me that I had never told him his grandmother had died years before either. What was the point in making him sadder and more miserable than he already was?

When my birthday came that year, celebrating was the last thing on my mind. I knew some friends were disappointed, but they understood, of course. Sometimes I was up and sometimes I was down and whatever was alright with them. I often wondered if I were them, whether I would be as understanding of me as they were.

The Pisces time of year is usually a busy one in my sweet circle of friends, but not only was I not aboard the party train but neither was my good Pisces pal and masseuse of the last fifteen years. Cancer was her affliction, and she was fading. Finances had a lot to do with her impending demise. Like many of my friends, including myself, she couldn't afford health insurance, and because she was a working gal with no big bank account to fall back on, her options were limited. I had been uninsured for seven years. I was counting down to my sixty-fifth birthday, when I would get Medicare. Who would have thought I would EVER look forward to that huge number? I felt my own health declining, so there was a certain sense of urgency. I'd spent so many disappointingly powerless years in the hoop-jumping system of the greedy private insurance world, and I was looking forward to seeing how the government plan would work.

My dear friend with the magic fingers died in the arms of several of us at her own home, which is where she wanted to be. She was sixty-two.

Ah, but that year of loss and further grief had just begun.

A late night call from my Canadian brother's son brought more bad news. My brother was in the hospital with what had turned out to be terminal stomach cancer. He died a short two weeks later. My empty words to him on the phone during his last few morphine-filled days left me feeling no closure. My constant grief was compounded even further. He was the older of my two younger brothers. Now, my Hawaiian brother and I were all that was left of our immediate family.

Those three back-to-back deaths left me feeling devastated, frail, and old. Every morning when I got out of bed, I felt crappy and achy all over, and my limbs didn't feel like they belonged to me anymore. My legs and arms felt numb and tingly from the knees and elbows down. The sensations were alternately hot and freezing cold, and walking required conscious effort. My balance was out of whack too, a totally unfamiliar sensation for me. Until lately, I had been able to do a one-legged tree pose in yoga for several minutes at a time. When I looked in the mirror, I saw my father's mother with her white hair and lined face staring back at me. So it looked like I would also be grieving the loss of what was left of me. Trying to stay positive, push through, and keep on was getting harder. I had used every survival trick in my bag, and now it was empty. I was really starting to worry that I would die before Scott, a terrifying prospect. Who would care for him?

A couple of weeks later, my third great-grandchild was born, a girl, after five boys.

Summer arrived. The one good thing I had to look forward to was a visit from my brother and his family from Hawaii. He was the only member of my immediate family who always visited Scott with me when he was here.

When I picked them up at the airport and saw him, I was stunned. My youngest surviving brother, who had always been so nimble and athletic and had lived to surf, hobbled down the gang plank. In the previous months, he had had two back surgeries. I knew the first one had failed, and it was obvious the second one was unsuccessful, too. The trip from Kona to Montana is exhausting, and I could see fatigue hanging on his face. What tipped me completely over was his slurred speech and tremors. When I asked him what was going on, he made light of it and ascribed the strange symptoms to surgery and pain pills. After everyone was tucked in that first night, I went to my room and curled up on my bed gripped with fear. We visited Scott together, but after that he didn't seem able to do much but sleep and eat. After I dropped them back off at the airport, I tried not to think of tragedy. Think he's right, I told myself, it is a temporary condition. But what occupied my thoughts was that some of my own symptoms were less exaggerated versions of his. We shared an uncommon past, one that I was convinced had killed Scott's father. We had all been exposed to massive amounts of pesticides from his crop-spraying business.

When Scott had his accident years ago, there were not many information portals. Now we had the internet, where there were infinite sites to scour. I had never had any reason to investigate pesticide/chemical poisoning before, and my research results surprised me. Some of the in-depth controversial subjects that were covered online had very little coverage on television or in the newspapers. I grew up long ago gleaning my information solely from our daily newspapers and television, before the electronic databank was amassed and now could be easily accessed.

Staying in my body got harder. The more I explored the myriad explanations for my brother's condition and mine, the more it came back to an overload of chemicals that could take down an immune system when it was already stressed out. My brother's stress overload was from back surgeries; mine was obvious.

In the last twenty-seven years, I had often regressed to when I lost Scott, down to the exact moment I found out and all of the subsequent uncontrollable travels to dark places. I found out online that there was a name for those regressions: post-traumatic stress disorder, or PTSD. The fear about my brother's current condition, whatever it was, summoned up an episode of it.

In my eyes, my friends had earned their sainthood badges. My tales of woe fell upon their ears with increasing frequency, and still they were able to keep me in an upright position. Between those loved ones holding me up, the mourning doves cooing, the loons calling, and the eagles and ospreys soaring, I was hanging on. If I had still lived in California, I would surely have perished long ago.

August brought another jolt of fear. An early morning call from the nurses at Manor was to tell me of an appointment they had made for Scott to have an ultrasound at our local clinic. They had noticed blood coming from his penis two days before. I knew about that, and I wasn't particularly worried because we had routinely dealt with these occurrences before, with the tests revealing a treatable bladder infection. The nurses told me the tests came back and it wasn't an infection this time, so they had made the appointment for him to be brought in to find out what was going on. In twenty-seven years, there had been so many setbacks and hurdles that had proved to be treatable in some manner that I had gotten complacent.

The ultrasound test showed a large mass in his bladder that even I could see on the screen. To make a diagnosis, Scott would need to be scoped, which involved inserting a camera contraption through his penis into his bladder. That would happen in two weeks. My mind and body simultaneously slipped into a numb state. On the day of the appointment, the assigned urologist had me look down the scope to view a huge mass of some sort. It was almost certainly malignant, he told me. He was puzzled because bladder cancer was not common in men of Scott's age. He asked if Scott had been a smoker. "No," I informed the doctor, "he was only fourteen years old when he had his accident." The doctor said that that really left pesticide exposure as the most logical culprit.

The next decision was agonizing beyond belief. The dilemma was: to treat or not to treat? Once again, the quandary from signing the advance directive those many years ago was front and center. It explicitly stated that he would not be given any life extension treatments. But I had crossed that line long ago, and now I didn't know where to re-draw it.

The doctor recommended a surgical removal of the tumor and a chemo series. If the tumor was not connected to the wall of his bladder, then it was pretty straightforward. If it was connected to the wall, the bladder would need to be removed and his plumbing re-routed. It was up to me to make the decision. I explained it to Scott like this, "You have cancer, bud, and you have suffered more than anyone I have ever known. You're my precious son, and I wish you could let me know what you want, but you can't, so I decided for you to have the operation on your bladder. If the tumor is attached to the wall, then we will have to agonize about more decisions."

The operation consisted of a roto-router type of procedure, all done through his penis. Medicare considered it an outpatient procedure, but because the tumor was larger than the doctor had thought and took longer than he had planned, we found ourselves spending the night in the hospital. After a restless and uncomfortable night, we returned to the Manor the next afternoon. We were so lucky to have the caregivers we did. The Manor staff awaited us with concern and attentiveness. Lab results followed. The tumor was malignant, but it had not been attached to the wall. Whew! It felt like we had dodged a bullet. No more decisions.

With that bit of good news, all I could think about was getting on my horse and taking off for a big dose of the woods in the high country.

It turned out that Scott needed a second tumor removal procedure which proved less extensive than the first. Chemo treatments would begin soon; it was to be a round of six.

Breathing deeply was becoming more of a challenge. It was time for an escape.

In the southwest, the fall colors change later than on the east coast. They aren't as dramatic, but they are the colors of the seasons that I grew up with. I felt the pull of a road trip south.

I had always dreamed of being a writer. I headed for Moab, Utah. A five-day writer's workshop was being held there; the theme was food and farming. It was right up my alley. One day, our group was sitting on the banks of the Colorado River in a dying peach orchard that had no doubt once been someone's vision of success. Our assignment was to write whatever that scene brought to mind. For me, it brought flashbacks of the ranch that our small family had developed together in Valley Center. We optimistically planted an avocado grove, but the cost to pipe water from the Colorado River across a mountain range to what was basically a desert was enormous. Mature avocado trees need fifty gallons of water per tree a day. Water in Southern California was a precious commodity. Looking back on it, the notion of growing a tropical fruit in a desert seemed like sheer folly.

When the holidays came, I was the Poobah TuTu of three. I gushed over my darling "Power Woman" to be. At seven months old, she already had a knowing twinkle in her eye. If I had learned anything, it was that the time from infanthood to parenthood was short.

The last week of the year brought me unimaginable bad news. I had feared that my Hawaii brother had Parkinson's disease, a terrible fate but not immediately fatal. If only that had been true. His final and definite diagnosis was of amyotrophic lateral sclerosis, or ALS, more commonly known as Lou Gehrig's disease. I felt my heart fracture. From what I knew, there were few worse ways to die. This disease affects nerve cells responsible for voluntary muscle control. Little by little, he would lose his voice, his ability to swallow and then to move, and finally he would be rendered unable to even breathe. The diagnosis is always fatal. My strong and articulate brother's life was doomed to end much like Scott's. He would end in a locked-in syndrome condition, too. One by one, my family was evaporating, making me feel like a tragic Kennedy family member, without the fame and fortune, of course. Over the years, I had tried very hard not to feel like a victim, but this much tragedy and bad luck in one person's family was now making me feel like one. My poor, sweet baby brother; I simply couldn't bear the thought of losing him, too.

Like Tinkerbell, I felt my light getting dimmer. Every friend that I had sent me books on dealing with sorrow and coping with it, and I filled my time reading each them. But I didn't think that my pity party was going to end anytime soon. I journaled, journaled, and journaled until I felt the pages weeping with me.
YEAR #29 2010

The New Year's page in my life book looked so bleak that I didn't even want to share feelings with my poor overburdened friends anymore. I felt no one was strong enough to deal with me. Every word I uttered was grimmer than the last. My body and mind felt as weak as a kitten's. My coping tool bag was empty, like me.

My brother's diagnosis prompted me to spend long hours on the Internet searching for the "why" of it all. There was no one concrete cause of that disease. It did seem clear that a large cascade of circumstances could cause certain individuals whose DNA was programmed for problems with nerve damage to succumb to it. Like most degenerative diseases suffered by people in the last century, the suspects for triggering those conditions were directly related to diet, toxin exposure, and stress. There was no cure for ALS, only a steady progression downhill.

As for me, the symptoms I was experiencing were without a doubt nerve related as well. I decided to explore further, and I ordered a heavy metal testing kit. When it arrived, testing myself was a huge "Aha!" moment. It was almost a relief to see the mercury and lead levels in my body were at the extreme top of the chart. They are two very potent chemical poisons/toxins. It explained so much. "Aha!" the metal taste in my mouth. "Aha!" my twitchy muscles. "Aha!" my numbness and lack of balance. What to do now?

More and more books filled my mailbox as I devoured every bit of information on the subject. The more I read, the more it all started to make sense. Scott was currently undergoing monthly chemo treatments for a cancer caused by pesticides, i.e., heavy metals. His father had died from cancer. I learned that toxins affect people differently, it just depended on the weak link in your chain. Scott must have inherited his father's weak cancer link. My brothers and I shared a weak nerve link. My Hawaiian brother had spent a lot of time flying to spraying jobs with Scott's father. I shuddered to think about the many years I washed all of our clothes together in the same wash cycle as my husband's chemical-covered ones. Our whole family had been badly contaminated. And now I was also showing evidence of it. I simply couldn't bring myself to talk about the imminent loss of my beloved brother and Scott's only uncle or my declining vigor with Scott as we walked up and down the Manor hallways. To do so would have been to risk a total meltdown in front of everyone, and so I blathered on about the weather and current events that I had absolutely no interest in whatsoever.

I was the last Blake standing. At that point, it all boiled down to my survival. I couldn't die before Scott, not after making it this far. Not to die meant I had to get very focused on what I could do for myself.

Various publications and online sites addressed the connection between toxin overload and the inherent risks. Once poisoned, it was possible to improve one's condition to some degree with aggressive treatment. Various actions could be taken to eliminate toxins from the body and then lifestyle changes could be made to minimize the damage already done and prevent any further damage. One piece of advice I heard consistently was to remove any mercury fillings from your mouth. I had inherited my mother's bad teeth gene. Every tooth in my mouth had been filled, many with mercury or "amalgams" as the dentists called them. Mercury is so poisonous that it is considered an environmental toxin. So the first step for me was the removal of those fillings.

I came to find out that mercury is everywhere. Pesticides and herbicides are huge sources of mercury pollution. Coal-fired energy plants are culprits as well. Just breathing the air filled with the small particles carried on the wind from the mining, refining, and transportation of coal can affect a sensitive person's health. I found out it took a mercury sleuth to uncover just how pervasive our population's exposure to that deadly toxin is.

It was hard to imagine having more understanding and supportive friends than mine. As my news, reports, and laments went from horrible to worse, they listened and held me.

Wow, I did it. I reached age sixty-five. I had health care again. At my Welcome to Medicare free checkup, emphasis on free, I explained my symptoms and maladies. The doctor politely listened to my speculations of toxicity and then promptly dismissed them. Nevertheless I remained convinced that my downhill health progression was exacerbated, if not caused entirely, by the combination of toxin overload and unrelenting stress and grief. I had no female family members left to make any connections with, so it felt like I was breaking new ground on living to this ripe old age, albeit feebly.

More research online led me to a wellness hospital in Mexico that specialized in bodily detoxification included therapy for emotional support and healing. I began to fantasize how I could possible afford to go out of the country and receive treatments for conditions that were not recognized, treated, or reimbursed by Medicare.

When April arrived, I was stunned to realize all three of my grandsons had passed the age their Uncle Scott had been at the time of his accident.

My Hawaii brother was the only one left who knew him "before". As usual I liked to imagine that my adventurous son who had been driving a truck and riding motorcycles solo at the age of thirteen would have matured into a person of social activism like his uncle. But maybe not. Maybe he would have grown up to be a drug dealer or a serial killer. It was always easy to imagine, but it was all just dreams, nightmares, or fantasies. It was futile in any case, but it was so hard to control.

Healing and acceptance had become paramount to my survival. I made the hard decision to double down, go further in debt, and book a two-week stay at what I hoped would be a healing place for my body and mind. It proved transformational.

Mexico is not bound by the accepted U.S. treatment modalities. The facility I went to was a fully functioning hospital first and foremost. It incorporated cutting edge mainstream medical treatments for the body and provided first class psychological support as well. It was a holistic approach to healing that I had never experienced before.

I was transported over the border in a shuttle van that brought me into the stucco-walled courtyard of what looked like a five-star resort. Perched on a peninsula that offered breathtaking white water ocean views, it looked very majestic. It turned out to be magical as well. After I arrived, I was settled in and immediately began a battery of seemingly never-ending examinations and tests. I was assigned a special caregiver for every aspect of my treatment, including a physician, body worker, meditation instructor, biological dentist, chiropractor, dietician, fitness instructor, and psychologist. In two days, all of my assigned caregivers came together to review my case and put a game plan together. My team designed an intense detoxification program for the next two weeks. Every day from six a.m. until after eight p.m. there were treatments or lectures of kind or another. Extra sessions with my therapist were scheduled to account for the load of stress and grief that I was carrying.

Over my lifetime, I had spent many hours in psychologist's offices, but I had found it to be of only marginal help. The doctor assigned to help heal my mind and heart at this center was the most effective I'd ever experienced. I cried and sobbed during all of our sessions about one loss or another. After a while, he asked me, "Do you know what the difference between weeping and wailing is? I hear your weeping coming from your mind and heart but not your gut." His observation resonated with me. Elisabeth's workshops were all about release from the deepest, most intuitive places inside you. That would be your gut. "Weeping begets more weeping," this therapist told me. "Wailing from deep within your bowels brings relief." How had I forgotten that? Memories flooded me, centered on the length of red hose that Elisabeth had given me so many years before. I wondered where it was Since I had moved to Montana, I had lost track of it, with the result that for the last eighteen years I had forgotten how to wail.

Wailing is a primal human response. On the news from foreign countries and cultures, I noticed that there were some five-star wailers in other places. Images showing mothers, fathers, family, and friends throwing themselves on caskets and screaming are rituals that are not easy to watch, but they are healing. Those kind of mourning scenes are in direct conflict with the way Americans grieve in public. We Americans take pride in being stoic. Remember Jackie Kennedy after her husband was murdered? She was hailed as the ideal picture of grace and dignity during the almost week-long goodbye paid to our thirty-fifth president. I had watched it all on television, from the shooting to the final funeral procession, and no wailing was heard or seen. It is my opinion that stoicism is greatly overrated and unproductive. I needed to look for my red wailing instrument and get reacquainted as soon as possible.

The real world was waiting for me upon my return, but in some small ways I felt better equipped to deal with it. My physical condition was confirmed as a severe toxin/stress overload. I was given a plan to follow, and I had obtained a few more useful tools for my emotional coping bag.

June came with good news and bad. My daughter celebrated her tenth year of sobriety and was on a good course. Pinch me, please. I was grateful beyond belief.

June also brought a call from the clinic that did my Welcome to Medicare mammogram. They didn't like the looks of it; would I come back? After multiple additional screenings, they decided a biopsy was needed. This caused my imagination once again go to thoughts of dying before Scott, which was out of the question. The biopsy came back negative, but it certainly created a lot more stress until it did.

Scott completed his last round of chemo. What was involved was not all that time consuming, but it was uncomfortable. Every other month, he had a plastic tube threaded through his penis to his bladder and then he was flushed out with some mixture meant to eliminate any bad cells left behind after his two surgeries. Each round of chemo necessitated a precautionary round of antibiotics because of the invasive nature of the procedure, and that was more for me to worry about. Too many antibiotics suppressed his already taxed immune system. From that point on, he was to be screened with a scoping procedure every three months. Please, I begged the powers that be, no more decisions for a while. To celebrate just how tough Scott had been those last months, I bought him a very soft, cozy, fleecy pair of Superman pants. He was my hero. What a will to live.

With that crisis behind me, I left for Hawaii to allow my sister-in-law a short escape of her own from caring for my brother. He had lost his capacity to speak, and the frustration from that was heartbreaking. Having to see the most articulate one of us silenced and struggling to even swallow was horrifying. I was, however, grateful to spend time with him, knowing that it might be our last together.

When I returned to Montana, my friends called to inquire about the trip and my brother's status. I just couldn't stand making any more crappy reports. I quit answering the phone and let my journal, not them, take the brunt of my grief. My journal had become my strongest lifeline, and I took some comfort in thinking that as long as I was writing I was surviving. There were no whining limits with journals. Mine urged me daily to whine away.

My brother's fifty-eighth birthday was in September. I walked around like a zombie all day. You're only a lad, I would have told him two years ago. But this was the year his life would end. Of that I was certain. I lost my strength later in the day when I heard a tune we both loved on the radio. My baby brother had acquired a "son" status of sorts after our mother died. I was losing him both as a brother and a son. My heart had broken into so many pieces that in this sixty-fifth year of mine there was just a faint cloud of particles left, and it felt like those few remaining pieces were blowing across the stars to Never Never Land. In some ways, it would be a good thing. The pain would be over, but I also knew it was not a choice to die before Scott.

Fall set in, and every time I was able to ride in October was a gift. It is my favorite time of year. Perfect weather predictably offers cobalt skies against brilliantly colored trees of yellow and gold with nights cool enough to cozy into. Riding was my most coveted escape during that treasured short season. As soon as the saddle came off from one ride, I was dreaming of the next.

Scott's roommate of several years died. He had been about Scott's age, and had been a talented musician before MS robbed him of a longer life. We talked about his loss, Scott and I, although I couldn't imagine it was a surprise to him. The rooms are not large.

My health hadn't taken the quantum leap towards healing that I'd been hoping for. I was doing everything recommended to detoxify myself, and while I did feel a bit better I could see that healing would be at a tortoise's pace, not a hare's. My Montana medical team insisted on further testing because of our bad family history, and I was greatly relieved to find out I had dodged the MS and ALS bullets, but I still felt like crap. It had gotten to the point that if I could pry myself out of bed, eat, do dishes and make my bed, I was spent.

Whenever the phone rang at three a.m. it always made my heart skip a beat. When it rang one early mid-October morning, my gut told me it was about the death of my brother. It was. Although his death was far from unexpected, it felt like my heart was being ripped from chest, and the bellow that emerged from deep within my belly was terrifying. Spasms, contractions, and wails brought me to my knees. I had never experienced that level of grief before. Hours later, I awoke on the living room floor curled up in a fetal ball. After calling my daughter, I went to bed and couldn't get up for two days. By now of course I knew that when it was over, it was over. Coming to grips with it was another thing entirely. Grief and sorrow for twenty-eight years was enough.

I'd looked at death from many sides. It is a certainty for us all. Some ways are clearly preferable, but to whom? It seemed to me that the main death categories were instant, prolonged in some time frame or another but certainly terminal, and living death.

The instant deaths were lucky for the goers but harder on the stayers. Having no closure with a loved one before they go is a heavy cross to bear. Too many "what ifs" can devour you.

A prolonged death, whether prolonged for hours or months, is perhaps is a bit easier for the stayers because have an opportunity for closure, but it is surely an agony for the goers on various unimaginable levels. A living death is rare, and it is agonizing for everyone involved. By far most deaths fall into the second category. Most of the deaths that have affected me were in the second category, with my mother in the first category and Scott in the third.

My mother was at the top of her game and finally living her own dream in Hawaii when, right after her forty-ninth birthday, she died instantly in a one-car accident. She wasn't wearing a seat belt, was thrown from a convertible sports car, and was gone in one quick poof. The day after she died, I received a jolly letter from her that she had mailed a few days before detailing how happy she was in her new life. I was twenty-four years old, and my brother was sixteen. We both grieved for the conversations we would never have with her, which would have included goodbyes at least. The only weird bit of comfort I gained was that she was granted her wish that her life end exactly as it had.

My mother had learned to drive at the late age of twenty-five, the year I was born. Although she never felt comfortable behind any wheel, the cars took her where she wanted to go. And go she did. Our mother was an optimistic, glass-half-full kind of gal, but she spoke several times when I was young of her death wishes. She didn't speak of them often, but it was enough that when the trans-pacific call came that awful day those memories were awakened.

She spoke of it when she was driving, all hunched over the steering wheel, forehead leaning toward the windshield like Mister Toad in The Wind in the Willows. She would comment out of the blue, quite matter-of-factly, that when her time came to die she wanted it to be instantly in a car crash. She had watched her own mother die in a prolonged death over an agonizing year, and she was not keen to have herself or her kids experience that kind of departure. I guess she thought it would be easier for us if she went instantly. It wasn't. But her wish came true, although I think she meant to experience it at around age eighty rather than when she did.

The living death I knew was Scott. Having grieved over too many prolonged deaths and witnessed Scott's living death, I pick instant death for myself... but not yet.

It had become harder for me to go to the Manor and see Scott. My own failing health was placing some very serious limits on my ability to do much of anything. Sleep came fitfully, and even that escape often eluded me. The toll the holidays took compounded everything. The final week of the year found me asking only for a clean and stronger slate. I felt like a lame horse limping back to the barn. Surely our family deserved a grief moratorium the next year.

During the final days of 2010, being fully spent in every way imaginable, I experienced what I later found out was a visit from the Old Hag. After a screaming and sobbing session with my red hose, I laid my exhausted head down on the bed and awoke to sounds of someone in my small apartment. I wondered why I hadn't heard a knock on the door. When I tried to call out to see who was there, my voice was gone. It felt like my vocal cords were paralyzed; in fact, I couldn't move my body at all. Sounds came of the refrigerator door opening, and I could hear the slight sound of dishes clinking together. Lights were going on and off as footsteps walked around the one large room, but even though I could hear the "whatever" quite clearly from my attached bedroom where I lay, it never came into view. "It" didn't come into view because I was face-up on my back, completely unable to move my head at all. My entire body felt detached from my mind, so all I could do was listen for what seemed like an eternity to the "whatever" walking around, opening cupboards and running water. All I could figure was that "it" couldn't see me. Maybe I'd gone invisible. Somehow that thought calmed me, and I could feel the huge weight of something lying on my chest ease a bit. To this day, I can't remember if I fell asleep before or after "it" had left, but upon awakening again everything was completely normal. I got up expecting to find dirty dishes in the sink, but there were none. No lights on, no music playing, nothing whatsoever askew. Wow, what a dream, I thought.

I came to find out some months later I hadn't had a regular dream or nightmare. It was a condition known as "sleep paralysis", and I had experienced a classic episode. Sleep paralysis has been documented since the Middle Ages, going by different names over time. Since many weird things are blamed on women, one name for this condition was "Old Hag" syndrome. Stress is the biggest contributor to this sleep disorder, and some folks have frequent visits from the old hag. Oh God, I thought, was this what it was like for Scott all the time? For twenty-eight years? Incomprehensible that he had been so tough as to survive that long.

Scott's first screening after his chemo ended came out clean as a whistle. His doctor was pretty pleased about it, as were I and the rest of the staff at the Manor. A decision reprieve was just what I needed at the year's end.

YEAR #30 2011

Retirement reality had set in. After holding a real estate license for thirty-five years, mine had officially expired. Actually, the reality hadn't really quite set in but I was looking for some new doors that could only open when others closed. Knowing that the year was beginning with no deaths on the horizon made me feel hopeful of a smooth mellow year.

My sixty-sixth birthday and Scott's forty-fourth were duly noted. The anniversary of twenty-nine years since Scott's accident melted into all the previous ones with less surprise and resistance than ones before. I was hopeful that this year would bring a turning point for my own health. All the suggested routines, practices, diets, and exercises needed to pay off soon.

Scott's favorite night nurse had moved to Nebraska many years before. We still spoke and wrote frequently. Scott's eyes seemed to light up whenever I brought a letter of hers to read. A couple of years ago, I had given her the gift of a visit to Montana to see Scott and me. She sadly reported that due to her eighty-two-year-old knees she couldn't imagine making the journey, and she tearfully declined. By this year, she had undergone two successful operations and therapies that had restored her mobility. She called to tell me that she could come in spring or early summer. I was very excited, but I told Scott only that he could expect the best belated birthday surprise ever.

It had been fifteen years since she had seen him last. Her five-day visit in June was all we'd hoped it would be. I told Scott the day before her arrival that she was his surprise belated birthday gift. His face involuntarily lit up. It was a happy and tearful reunion and we could tell Scott was aware of it all. The two of them spent most of the next four days together, visiting one and all, and telling the story that bound them. They were clearly the hit of the show for that short but wonderful period of time. If felt like a good closure for them. "Our paths are not going to be crossing again in this life," she told him, "aren't we ever lucky to have had these last few days together?"

Our connection with this wonderful woman was a major touchstone in our lives. What a treasure.

After seeing him, she sent notes even more often and relentlessly prodded me to finish and publish Scott's story. It had been four years since I'd laid the first partial draft down on paper and then stuck it in a drawer. I told her I would think about it. Maybe in our thirtieth year I would pick it up again.

My Scrabble club looks forward to the summer because then we can play outside. We always pick a spot near the water. We'd had many memorable games on the shoreline of one lake or another or next to a bubbling stream in the shadows of the majestic mountains that surrounded our valley. It was always a welcome three-hour girl talk and laugh-a-thon. As a bonus, all the players are also accomplished cooks, so we were assured of fun and good food wherever the venue. These nourishing entities kept my boat afloat.

Scott and I seemed to be declining together. I know that I had been wondering how long my tattered old bod would be able to plod along. I could only speculate on what he was thinking.

A fantasy of mine was that when that blade slammed into the back of his head, it activated a "jolly" connection that kept him happy to be alive, pain free, and wanting to keep on living. Maybe it was nonsense, but from time to time I held that image anyway.

Just when I needed an escape transfusion, one came to me in the oddest way. A sea adventure had been floating around my mind for some time. Ah, the calming sea. In a most complicated and serendipitous way, two tickets came to me, at a bargain basement price via a silent bidding auction that was for a person in need of help with health care costs. It was a trip for two through the San Juan Islands on the loveliest of boats. My good old beach buddy joined me and off we went.

We arrived dockside after a two-day drive to the coast. Depleted but excited, we scrambled aboard. I was immediately re-energized by the bird and fish sightings from every deck. All we had to do was sit in a comfy deck chair and watch as the show unfolded. The fifty-year-old wooden boat had once been a research vessel among its other incarnations. It had been re-outfitted several years before and now served tourists in a relaxing and pampering way I had only imagined. I loved having activities arranged. It was so tiring to always have to make every decision. It made me feel cared for to have the decisions made for me. We kayaked, whale watched, hiked, and played games, whiling away the days in between our five-star, thrice-daily dining events. It was just the divine getaway I needed to transition from fall to the long winter.

After our favorite night nurse's visit from afar, Scott seemed quieter. The Manor team had the ongoing goal of keeping him laughing with funny jokes, songs, or stories. Lately they had been reporting less success.

It was the last ride before hunting season started, so we hit the woods with a special relish. By the time hunting season ended, riding weather was usually pretty much over, too. As we headed into the woods through the national forest toward the Canadian border on that perfect fall day, I thought of a good friend who had not only dreamed of the ultimate horse adventure, but was currently living it. Like so many truly unique and independent entities I'd met since living here, her story was one of a kind.

She and her husband had moved to Montana about the same time I did. They built their dream cabin at the end of a long dirt road that offered no power or well but held unparalleled beauty, wilderness, and privacy. Her husband died in a car accident soon after they arrived, and she had supported herself by opening up a ballet studio. She had two clearly distinct passions. She was a classically trained dancer and an accomplished horse trainer. But her real dream was to get on a horse and just keep riding. For the seven years since she had left our real world, she had traveled thousands of miles of roads and trails all over the continent, all by horse. She had earned the nickname of the "Lady Long Rider" and had a growing following. She told me that she'd become addicted to that way of life, and it had become harder for her to stay off the trail. The pull was that strong. I was thinking about that on our last ride of 2011 as we cruised through the woods on what I called my "four-lake" tour.

As the year drew to an end I felt like I had earned my "I'm still standing badge." Whew...twenty-nine years and still counting.

Scott was visibly sliding downhill. His fevers were up and down, the oozing sore rashes were combated with ever-increasing amounts of steroids, and he seemed to be uncomfortable most of the time.

My daughter, my youngest grandson, and I came to spend Christmas Eve with him. We once again read our tattered old copy of the Grinch. It would be the last time.
YEAR #31 2012

This New Year, I planned to finish Scott's story up to the present. Finish this thirtieth year of a chronicle that I could never have imagined in the beginning, and one I knew I might not live to see the end of. Dying first was the scariest scenario I could imagine, but it was becoming increasingly possible as I got older. I had already lived years longer than my two younger brothers, and I hold no great illusions of longevity.

The phone rang at three a.m. one night in the first week of the year. It was the Manor. "Scotty is exhibiting a variety of symptoms," they said. "We feel he should be hospitalized. We want to call an ambulance. Do you agree to that?" I told them that I did not agree, and said I would be there as soon as I could. When I arrived, the night nurses were clearly upset but relieved to see me. "His fever spiked to 104 degrees," they said. "And his blood oxygen level is very low. We think we have him stabilized but don't know what to do if it happens again."

I reminded them that somewhere amidst all his pounds of charts there was a medical directive that mandated a "no code" procedure. "He needs to see the doctor in the morning for an evaluation. Please have the day gals call me when the appointment is set up," I requested, and left to get some sleep.

"Scott has pneumonia," the doctor said. So Scott was given more drugs. Lots more drugs. Late that night, there was another call from the Manor. When I arrived, Scott was bathed in sweat and his pulse was racing. He seemed to be in a lot of pain. His caregivers asked what they should do. "Keep him out of pain," I replied. After two doses of morphine he seemed visibly more comfortable and his pulse rate had slowed somewhat. His breathing remained labored and shallow, and I was very very worried. On top of that, my heart was breaking because he couldn't communicate how he felt. But he was comfortable and stabilized. I drove home to collapse.

My annual and much-needed February escape was out of the question. Even as his condition improved during the latest round of drugs, I was worried he couldn't hold his own. Yes, he was strong, very strong. He also had the benefits of newer medical technologies and five-star care. For the last thirty years, he'd been lucky to have his nursing teams virtually hover over him. Whether it had been a blessing for his life to be extended in this manner will never be known. But he was losing ground now.

Amazingly, in a few days his color was coming back, albeit slowly, and I began breathing deeply again. However, I was not making any travel plans. He was very thin and frail with no interest at all in his mushy meals. All his nourishment was being delivered through his stomach tube, along with all his meds.

He had only been off his pneumonia drugs for two days when his condition took another dive. We loaded him in the van and returned to the local doctor's office. It was more than an office, actually. It was a well-equipped, comprehensive clinic that worked well serving our small community's needs, as long as you were sick between nine a.m. and five p.m. Monday through Friday. The nearest real hospital was fifty miles away.

Another chest x-ray showed a peculiar change. The pneumonia was now in his other lung. Of more concern was that the newly infected lung was surrounded by a large accumulation of fluid. More drugs were prescribed, but they were ineffective. His lungs didn't actually sound terrible, but his breathing remained labored and he ran a fever every night. The doctor said that the fluid surrounding his lung could be drained, but it was likely that the fluid would quickly re-accumulate.

In my gut, I knew his end was near. I could hear the voice of his long-cherished social worker telling me many years ago that his death would probably be from pneumonia. His medical directive kept popping up in front of me like a huge neon sign. The decision to drain the fluid or not needed to be made soon. Watching him suffer so much this last month on top of everything else had been excruciating. The instinct flooding me at that point was to have it STOP...all of it. Enough pain. Thirty years ago, my worst fear was to lose him. Now it was time for it to be over. Enough. I told myself I would think about it tomorrow.

Early the next morning, February 2, the phone rang. "Blood is coming out of Scotty's feeding tube," the nurse said worriedly. "I'm coming," I replied. They had been trying to administer his meds, but instead of fluids going in, blood was coming out. The nurses estimated there were several ounces of it. That was a lot. We waited until later that morning and tried again to plunge liquids in. More blood oozed out. Scott's feeding tube was his lifeline. He couldn't survive without it. So his fight was over.

All morning long, I called and sobbed to friends and loved ones. "It's time for him to go, Carol," each one of them told me. Scott's doctor and the nurses suggested transferring him to the special hospice room that offered a family privacy with loved ones in their last days.

Going to the hospice room meant only palliative care. It meant keeping a dying person out of pain. No water or food for Scott because in his case it was impossible to administer. Morphine-type drugs are the most effective pain relievers, and as his body slowly shut down he was to be given as many doses as needed.

I had never felt so alone in my whole life. Support was lavished on me, which I appreciated, but it did little to console me. It had been just the two of us, Scotty and me, for almost thirty years. How to say goodbye...give up...let go.

When Scott had his accident, I had to surrender a lot of my old roles and take on new ones. The next few days proved how hard the role of a mother letting go would be. Scott and I were not going to be spared further suffering. We all hoped his end would come quickly. It didn't. There were five more days of agony to come.

The Manor staff had rolled in another bed for me to sleep on and told me to go to the kitchen for whatever I needed anytime. And so we settled in for the end of Scotty and me. A few friends and family came and went as the vigil went on. My special beach buddy brought me dinner every night and would sit with me and just be. I was so grateful for that kindness. I could barely speak, I was so exhausted and full of grief.

As Scott drifted in and out of consciousness, I sat holding his hand or lay curled up next to him. When I thought he was lucid I would talk to him or read. Weeks before I had explained the seriousness of his latest malady. As time went on and his condition became dire we talked about that too. As the end got closer, we talked about what to expect. "When you see a light, go to it," I advised. That's all I could say.

For almost thirty years, I had watched him die cell by cell. On the fifth hospice day, I knew the end was very near. His already labored and crusty breathing took on a raspy gurgling tone. All day, I played music for him. His favorite night nurse use to play the song "The Wind Beneath My Wings" to him nightly, those many years ago. A copy of that very song was shared with us by a fellow resident. For Christmas, a friend of mine had given me a CD called Horses in the Wind. Scott had loved horses, too. All the horsey sounds, from the thundering of hooves across a prairie, to the joyful squealing of frolicking foals were set to the soothing harmonies of nature and uplifting symphonies. I lay holding him for hours while we listened to them over and over. "Go to the light, baby, go to the light," I kept whispering in his ear.

One day, all Scott's nephews came to say their goodbyes. When my friend brought dinner, Scott's sister and I took turns leaving the room to eat.

At nine that evening, the nurses came in to medicate and reposition him. As they rolled him over, he quit breathing.

After a moment of disbelief, I could feel thirty years of suppressed pressure moving upward from my groin and racing up my mid-section. It felt like lava that for untold eons had been bubbling unceasingly and inconspicuously. As the reality hit my heart, the heat of it exploded in my mind. Thirty years of quashed emotions erupted from every cell of my being. It was over, and it was finally OK to wail about it. It was over. Oh my God, it was over. And I wailed and wailed while holding him fast and dear for the very last time.

EPILOGUE

FEBRUARY 8-DECEMBER 31, 2012

February 7, 2012 was the end of the story of Scotty and me. Now there was just me.

Reflections abound.

His memorial was at the Manor with his family and community. All three of his handsome grown-up nephews, my grandsons, were there, as was his sister, of course. Several of my friends were there to sustain me, too. Once more we played the song so treasured by Scott and his favorite night nurse, "The Wind Beneath My Wings", one last time for them both. My youngest grandson made a video of the service to send her.

Scott's nephews and cousins never knew him "before". They lived through his "after" years with him, but that's all they knew. That was one reason I felt compelled to tell Scott's story, his whole story. It is important that they know from what an amazingly strong and tough gene pool they have sprung. I want my grandchildren and now great-grandchildren to know a bit about Scott "before" and how he struggled so hard to live "after".

Cards started filling my mailbox as the news spread of his death.

Cards. In thirty years, there must have been hundreds, each of them special and remembered.

Cards in the "Comfort from God" category.

Cards that shared total helplessness and heartfelt grief.

Cards of encouragement to "hang in there".

Cards imploring me to believe in miracles.

Cards of support and remembrance from teachers and doctors.

Cards advising me to make sure and take care of myself.

Cards from strangers that knew or knew of a head injury victim who had recovered against all odds.

Cards that arrived later than others from friends and acquaintances who said they just couldn't bear to think of the whole thing any sooner.

And now, since Scott died, there has been another loving and supportive round of cards.

The only ones I could never relate to were the ones telling me that God never gave anyone more than they could handle, like tragedy was a special test of some sort.

As a girl, I was a Brownie for one year and a Girl Scout for two. Those worthy organizations were about achievement and service. There were badges awarded for just about everything from ice skating, journalism, and pet care to ones for community projects. I felt a sense of accomplishment every time I not so expertly sewed a new badge onto the green sash draped over the shoulder of my proudly worn uniform.

In the last thirty years, I'd earned a whole new crop of badges that weren't part of the Girl Scout Manual. If I closed my eyes, I could see the innocent sash of my youth replaced with another sash: my "Motherhood" sash. Among the many badges never wanted but awarded anyway were TRAGEDY, SORROW, LOSS, SUFFERING, ANGER, and DEPRESSION, as well as the hard-earned UNCONDITIONAL LOVE and TENACITY. All of them were precursors to the final and hardest one to attain, SURVIVAL. I didn't die first and so against all odds I can now sew that one on, too.

Two months after Scott's death, I realized I had grossly overestimated my powers of recuperation. It still felt like I was trying to walk through waist-high water. Damn, I had gotten good at pushing through...always pushing. "It's okay to stop," I told myself, but my mind still clambered to the top of the "catastrophic thinking" mountain. It was over. I could come down. I needed to disconnect the over-used and well-connected neurons that expected further tragedy. But how could I disconnect them?

For over two years, I had been diligently working on getting my health back. Still, I felt like an invalid. I had come to accept that the nerves in my arms and legs were permanently damaged. My stamina was shot, as was my sense of balance. Painful nighttime spasms still robbed me of sound sleep. This assault on my health had prevented my participation in many activities that used to bring me joy. Time, I told myself. Give yourself time, Carol. Time is a finite commodity, however, and my aging internal clock was screaming TICK-TOCK. If only there were an energy source I could stick my finger in and feel fifty again. I'd even settle for sixty. I felt at least a hundred years old.

Scott is not so unique anymore, although all of those years it felt like it. Many men and women are surviving wars and horrific accidents alive, but not whole. For every wounded warrior and other victim, there are multiple family members who suffer with them. My mind keeps telling me: finish writing Scott's story. Maybe it would help just one other hurting family member in some small way. Still the writing task seemed so overwhelming, like trying to eat an elephant.

I only kept a few of Scott's things. They included the comforting and very soft Superman pants that I bought during his cancer trials. Amazingly, after slipping on those "my hero" pants and taking the first small bite of that elephant, the story started pouring out of me. It was like the words knew that if they were set free to fly away, I would be free, too. Just like Superman.

I kept thinking I would go visit all the folks at the Manor. But I didn't go. I did see some of them one sunny day when I volunteered to push a wheelchair on a local field trip one afternoon. Seeing them was wonderful, but I just was not ready to walk through the Manor doors yet.

Summer brought another pity party. One afternoon when I went out to feed my horse I found him writhing on the ground. I told my vet on the phone that I thought it was colic and begged her to help. She arrived within the hour and confirmed my suspicions. A test indicated it was too late to save him unless we tried a very expensive and risky surgery that could only be performed in a clinic seventy-five miles away. At that point he could barely even stand up. Two hours later my helpful neighbor with his backhoe was digging my sweet boy's grave. His spirit had helped me cope with my life for over fifteen years. Horses are very intuitive and healing. Maybe he thought his job was over after Scott died. I'd had quite a few horses in my life. He was my biggest love of them all. He was twenty-four years old. I heard the old Janis Joplin refrain running through my mind. "Freedom's just another word for nothing left to lose." I certainly had experienced enough losses in my life to be really free.

Although I was free, at the end of the year I felt purposeless. For thirty years, my life had revolved around Scott. Now that I have passed a lot of windows and gotten through the "survival" portal, I am lost. I feel like a piece of driftwood floating about, unsure of which shore I will be deposited on. Why didn't I get a copy of the "What's Next?" manual? I got good at existing, damn good, and weary of it to be sure. The question remains: What next?

Every time that question popped into my mind, about ten times a day at least, my gut screamed and I heard myself say, "Just finish Scotty and Me, Carol, don't fret til it's finished. It will be a closing and an opening." And now I am almost done. The Superman pants are threadbare and it is mere days from being in the can, so to speak.

Deciding to publish our tale has been all about unburdening and releasing myself. Yes, I wrote it for my descendants, but I needed closure. Letting it go into the nebulous ether of internet space seems like the ultimate liberation to me. For some reason, I envision everything uploaded and downloaded whirling and twirling around somewhere. Where it actually all goes I'll bet vexes many people. To me, it seems like an infinite void that can absorb this old gal's entire thirty-year load.

It's like when I fly in an airplane. As I sit on the tarmac, I always envision a huge sack labeled "Fears, Worries, and Pain". Then I imagine stuffing the sack full. As the plane roars down the runway, I listen for the sound of it leaving the ground. When it does, I mentally haul that overflowing bag to the window and throw it out. As we ascend it is clearly visible on the asphalt below, and then it is gone, left behind, and soon out of sight and mind. I have used that visualization strategy repeatedly. It allows me to compartmentalize the times I have to deal with all the crap, and my escapes from it. For all these years, that exercise has served me well. But Scotty and Me is too big to leave on a runway.

It needs to be unburdened and absorbed by the entire universe. Abandoning it all to the internet feels like I'm letting it go.

It only takes one CLICK and it's all gone. It will be my ticket out of "survival" mode. It will be my passport to peace. Like Jiminy Cricket said, "If you don't have a dream, how can you have your dream come true?"

And after thirty years, letting go is my dream.

