Step by Step

Step by Step: A Bittersweet Life
         (This story was written in 1999 as I approached my 50th birthday. I like it because it really gives you an idea of who I am and about this part of my journey.) 

         Mothering my younger son, Ian Christopher, has been a call to let go of a dream, yet continue to hold a vision. It has presented me a life that I have come to look upon as bittersweet. I find it interesting that “bittersweet” is the particular word that emerges here, since it was always my favorite kind of chocolate, both of the opposing qualities being necessary for its perfection.

         Ian's was a beautiful birth in Takilma Clinic’s birthing room, where he joined me, his dad Leo, and his 7-year-old brother Ry on a warm summer morning in 1989. The garden was reaching its peak, and soon after Ian joined us, we planted a redwood tree for each boy in a special family ceremony.

         Life with baby Ian went along just as I expected it would until the night of the autumnal equinox, Friday, September 22, when a darkness descended on our family. It had been a hot, sticky, stressful day, and Ry had gone to his dad’s for the weekend. When I went in to go to bed that evening, Ian was lying face down in our bed in respiratory distress. He was breathing erratically and not getting enough oxygen to sustain life. In those few short moments, life was forever changed for each of us.

         What followed has been one family’s journey, through that darkness back to the light, through control into surrender, through fear and denial into love and acceptance. 

          Leo and I raced little 9-pound Ian to our local clinic, thankful that a doctor was on-call that night. The doctor got the oxygen going, then phoned for the ambulance, which drove us the endless sixty-five miles to Medford’s Rogue Valley Medical Center.

         Since nobody really knew what had happened to Ian, every possibility was explored by the hospital personnel. Was he coming onto illness or infection? Had he been shaken? Was his mom (me) on drugs? Had he had a near-SIDS (crib death) incident and been brought back from death? Or could it have been an initial seizure which caused him to not get enough oxygen?

         Whatever it was, his heartbeat was strong and his will to live fierce. In the pediatric intensive care unit, he changed from ours to not-ours. When Leo and I were forced from his bedside by the medical team, we were devastated. He was such a little guy in that great big bed. Struggling with life and death issues, we clung to each other, wishing there was something we could do, needing to just take him and go home.

         When Ry arrived to visit the next afternoon with Dan and Mary Beth, his dad and step-mom, Ian was just having his first seizure, and what was beginning to look like his recovery took a big dive. I remember looking up seeing Ry’s little face through the window, questioning what was happening, but in that moment I had to focus on what the doctors were doing, what they were telling us. I longed to console Ry, yet I was helpless to do so, and I sensed the comfort of the familiar disappearing from view.

         We faced severe brain damage; kidney failure; a persistent seizure disorder; and the world of drugs, medical professionals, and unanswerable questions. On Sunday morning the decision was made to send him to Portland’s Emanuel Hospital on a Mercy Flight to either resolve the kidney failure issue or prepare him for a transplant. After Emanuel’s medical team arrived, people bustled around the room preparing for the flight to Portland. Just as we learned there was no room for us on the medical team’s plane, Mary Beth came in to inform us that the only flight between Medford and Portland that day was departing in half an hour. We needed to leave immediately, before they took Ian from the hospital. Leo quickly asked everyone to leave the room, that we might have a few moments alone with our son.

         “They’re doing what they know how to do,” Leo said to me. “Let’s do what we know how to do.” Holding hands around our boy, we prayed a prayer of healing, of protection, of longing. We prayed for a safe journey and for a wise medical team. We held love in our arms. Then we let him go.

         Leaving Ry in Ashland with Dan and Mary Beth, we got onto the flight for Portland, our empty arms aching. We prayed again, envisioning walking out of the hospital with our baby in our arms, everything all better.

         Thankfully, Emanuel really knew what they were doing. They resolved the kidney dilemma right away, and then they worked on getting Ian stabilized neurologically. The frequent seizures were frightening to us, and everyone we were counting on for help spoke a language we didn’t yet know. One doctor told us of the dead areas in Ian’s brain and that he would probably be somewhere between a vegetable and a few years behind his peers. Another doctor, when asked for his opinion about these “dead” areas, said, “I wouldn’t call them dead, I would call them affected.” That helped, because we were desperate for something to hope for, a vision to hold. We prayed, we sang to him, and to each other, we asked our friends to hold us in their hearts, to see us as strong. We began the mental process of reweaving a brain. That's how we visualized it anyway.

         A dilemma we faced at this time was not knowing what The Plan was for Ian. Was it in The Plan that he would survive, or would he pass on? How were we to know what to focus on: the healing? or the letting go?

         As we walked together one evening, I said that I wished we could gather in spirit: Leo, Ian, and myself, to talk this situation over and clarify our focus. Sitting with Ian that night, I became aware that I was humming a song over and over. Listening, I heard: “See me. Feel me. Touch me. Heal me.” So that was that. Our focus was to be the healing.

         Our mothers and Leo’s sister arrived to wait with us, and we settled in for the duration of our stay in Portland. After 10 days, Ian was breathing on his own and the seizures were under control, so Emanuel transferred him back to Medford and local support people. Leo’s mom left, my dad arrived to join in the waiting, and Ry came to visit us regularly.

         Leo and I learned infant CPR, and on the day Ian was discharged, we were given a monitor that would measure every breath he took. Without a certain number of measurable breaths per minute, the alarm would sound to alert us. We left the hospital with our baby, as we had envisioned, but things had changed. Not only was Ian far from being a well child, but Ry had been enrolled in school in Ashland and would not be coming home with us. I felt that I had lost both of my children at once.

         At home, the season had changed from summer to fall. Our first impression was of the garden, where the fruits had withered on the vine and the redwood tree we had planted for Ian had died. As we got out of the car and went into the house, we realized we had no clue what to do. No one could tell us what these traumas would mean to Ian’s development and therefore to all of our lives. No one could guide us through the world of brain damage rehabilitation and let us know what to expect, what we could do, what we needed to focus on. We knew that his vision had been almost totally lost, and it didn’t take long to realize that he was not developing normally in other ways.

         We struggled to get back to the lives we had left behind. Ry, my link to a "normal" life, continued with school and came home on weekends. I missed him desperately. Leo helped with Ian and went to work whenever he could. I became head of our Research Department and Asker of the Big Questions. If anyone knew anything that would help a brain heal, I wanted to find out about it and try it with Ian.

         Slowly life came back to us as we learned how to live with intensity and uncertainty. Gone were the days of spontaneity, of easy living, of family outings and simple pleasures. Gone were the good old days, when life was just – well, normal.

         I read everything I could find that was written by parents of children with disabilities, looking for the key to how they had survived the experience. Had their marriages endured? What about the impact of traumas like ours on typically developing siblings? Statistics for families like mine are grim. I just hoped that love was big enough to get us through the dark times we were experiencing and those that were certain to be a part of our future.

         I learned to meditate and studied writings that uplifted my spirit. But reality lurked in our home, and anything I chose to do to help myself was soon defeated by the endless needs of little Ian. Days turned into weeks, then into years, and we gained a lot of experience. Looking for a way through the maze, we learned that medical professionals didn’t have much to offer. It was a “you’ll have to wait and see how he develops” approach. We had the feeling that we’d better do something NOW so that his brain could maximize its healing.

         Open to trying every healing modality we could find, we took him to medical doctors, herbalists, neurologists, chiropractors, osteopaths, homeopaths, psychics, native Shamans, Ayurvedic practitioners, channelers, naturopaths, even a guy who worked with a pendulum. We patterned him and did therapy for hours a day, calling on our local community for help. As friends and family emerged to join hands with us during our extended time of need, we learned the true meaning of “community.”

         We were introduced to “the system” and dealt with “professionals” who said to us “What Do You Need?” How were we supposed to know what we needed? We just wanted our regular lives back. I went over the edge in those early years, hoping beyond hope that there was someplace to land and that there were real answers for an Ian.

         Does it have to be true, just because most people believe it, that healing is not possible for Ian’s brain? Are those areas dead or are they just affected? What exactly is his potential? How far can he go?

         He has gone farther than people would have thought possible at the beginning, so perhaps our efforts will not be in vain. I know by now that if my goal is that he become a lawyer or school teacher, I will be disappointed. But if he could learn to communicate and to think, if he could maximize his potential, then all would be, indeed, possible.

         If he can’t, then have I failed? Has my time, my energy, my love, my life been wasted? Is his failure to heal a reflection of some failure in me? I used to think about that a lot, but by now I’ve pretty much shifted to a place of surrender and acceptance for What Is. My mottos for life are “It Is What It Is”; “Here we are … another moment”; and “SHIFT.”

         Ry finished elementary school in Ashland, finally moving home again for middle school and high school, easing that part of my heart. As the years went by, the impact of Ian’s brain injury revealed its fullness. He continues to require round-the-clock care by an ever-vigilant staff. People sometimes wonder aloud if we haven’t done enough, if we shouldn’t start focusing on ourselves instead of our child. Knowing that these comments come from a place of love and concern helps, but this is our beloved son. This is what we have been given in life. What else could we possibly do that would be more important?

         In my experience, when I stop and say, “now wait a minute here, this isn’t what I had in mind for my life” or, “excuse me, but I have other important things to do,” that is when depression holds on for dear life as I spiral downwards out of control. I’ve witnessed both Leo and myself pushing beyond exhaustion day after day, for years. Learning that it was essential to stop, look around me, listen to the day, and to get out of myself for even a moment, was a big step up. It was not until I accepted the fact that we had been given more than a family could do, that I started to get a grip and forgive myself.

         It took 9 long years for me to be able to answer the question, “What Do You Need?” Now I know what I need, and it all has to do with my ability to survive the experience: Inner peace, no matter what the circumstance. Courage to face each day. Vision to see the whole picture. Wisdom to be able to make right choices. Serenity to accept what life has given me. Love – how could any of this continue for a moment without the fuel of love?

         And most essential, I need a living, breathing Connection to the One who brought me here, to that which I call God or Great Spirit. As we celebrate Ian’s 10^th birthday and my 50^th (!!!) this summer of 1999, I look back and give thanks for all we have been able to accomplish; that despite the incredible shakedown of our family, we have hung in here together, loving each other. Even though we face incredible educational challenges and unknown medical and behavioral difficulties, I choose to look into the future with curiosity and hope. What Ian’s future will hold for him feels like a much bigger question than what my future holds for me. What will happen for him when he is bigger and stronger than us, when we are no longer able or willing to be available full time? Who will emerge to love and care for him when we are too old to do so, when we are gone? Where will he live? Is there a place for him here in his own community, where he can live and make his contribution? Or shall we set him up in some other place, closer perhaps to services but away from the loving support of home? Can I trust that love will be present for him no matter where he is? Will others be able to find the human being within the disabilities?

         These unanswerable questions come to haunt me in the middle of the night sometimes, but generally life is a Be Here Now kind of experience.

         As Ian is a present moment kind of guy, so has my life become about this moment, this hour or two, this day. There is no future-tripping with him, because who he is going to be in five years – or 10 – is beyond my wildest imagination. It is a “NOWHERE” kind of life, and I must choose, step by step, if I’ll see that as NO WHERE or NOW HERE. At least that much is up to me.