I am posting this article from the Toronto Star because my nephew Saleem died of cancer too. His last moments were exactly the same.
Nobody's father: Coping with a child's death
September 17, 2008
SPECIAL TO THE STAR
This week, TouchWood Editions publishes Nobody's Father: Life Without Kids – a collection of essays by men. Today, part three of a five-day series of reprinted essays from the book.
Our only child, Josh, died from cancer and now we are alone, in our house, and in ourselves. And yet we do go ahead with work and friendships, we laugh and sometimes tap our feet to a tune or get involved with a film or with travelling, with teaching, with caring for someone else's children. We breathe in the hard peacefulness that is borne out of the 10 years that spanned our son's diagnosis, hope, relapse, terminal diagnosis, death and then our living after his death.
My heart is 100 years old. I can sit and let the light warm my face today, I can listen to the "Flower Duet" and catch the milliseconds of silence between the notes and know that peace exists. I can look at the farthest edges of the sky and know that something is beyond all that. I can sit comfortably in his room and absorb the calmness, feel it making my heart heavier, richer.
Reader, I want to tell this story: it is what I have left of him, a narrative as unwieldy and disjointed as life itself. You can learn from this.
I remember a business conference in Chicago in the fall of 1983. I got the call that the baby was early, so I hopped on a flight, arriving in Vancouver four hours late. When I saw Josh in an incubator, I cried. He was fine; just a bit jaundiced and premature. Sandy was already able to walk around; she had been so collected and natural that she took photos during the delivery, using the overhead mirror.
I remember bringing Josh home a few days later, getting out of the hospital, into the car and into the apartment, wrestling with the confusing physical tasks of first-time parents. As soon as we closed the apartment door, I felt a clear line of demarcation: he was now with us, and everything changed.
I remember Sandy making him an orange spaceman Halloween costume. When someone asked him who he was, he would say, "Orange spaceman Eliot Wilson happy 2-year-old son Joshua." The next year she made him into a blue corduroy stegosaurus with spikes, a hood and a tail.
"Don't you think it's neat to have a mum like me to make you a costume?" Sandy asked him.
"Don't you think it's neat to have a kid like me?" Josh answered.
I remember the "Summer of Josh," as he called 1997: a February trip to Disney World, a summer drama camp with a part in A Midsummer Night's Dream and a week of rafting, biking and camping in the mountains.
I remember the next winter, his physical education teacher telling us: "If I were to have another son, out of all the students I know, I would want him to be like Josh."
I remember that in March Josh started to have a sore knee. We thought it was growing pains. It began to hurt more often: after a ski trip, after delivering papers, after slipping on an icy sidewalk. Then at school another boy checked him hard during floor hockey and he went down in pain. Sandy took him to the clinic for X-rays. Then we crossed that invisible line.
It was a cold spring afternoon when Sandy called me. Before she said anything, I knew something was terribly wrong.
"Josh has cancer." The words hit me in the chest.
"The doctor says it's 99 per cent certain. It's above his right knee. We have to go to the Children's Hospital tomorrow."
"How is he?"
"He cried a bit. He's okay now. We'll be home soon."
I hung up the phone and tried to let the information settle. I had to sit down. There was a tightening across my chest, inside my breathing. I came to the realization of any frightened parent: I would do anything for my child. I would cut off my hands if that would help.
But nothing worked. I look back on the 22 months that followed as the hardest journey ever. Diagnosis, treatment, amputation, treatment, reprieve, relapse, terminal diagnosis, death. And since I had to support Josh, to find ways to be with him and distract him and have a few cramped bits of comfort and laughter amid the fear, I could not give way to my pain in his presence. Although he knew how hurtful it was for me, we faced the facts but tried to find ways to enjoy what little time we had.
When went to the hospital for the last time he soon began to drift away. By morning, he could only keep awake and respond for a few seconds; the rest of the time he was babbling as the tumours on his heart and lungs restricted the oxygen to his brain.
We made the phone calls and gathered around him on that last morning. We told him how much we loved him, how he was such a wonderful son. By 12:45 he could no longer respond to questions and I turned his head toward me.
His eyes were looking at me, but it was as if he were asleep. I looked at Sandy and said, "He can't respond any more."
A minister came and said a prayer: all I remember was that it was about God. A nurse from the cancer clinic came in and suggested we give him a bolus, an extra hit of pain medication. His breathing remained shallow and fast for the next 15 minutes.
Now there was only Sandy and me, Josh's friend Matt and Matt's father. Others waited in the hall. I felt calm, watching his chest rising and falling while I held his hand.
Soon there was more space between his breaths. And then I watched as he took a breath, paused, took a breath, paused, took a breath, paused longer, took a breath, paused longer, took a breath – and then not another. His chest was still. I looked to Sandy and we nodded. I turned to Matt and said, "He's gone."
We were silent. The nurse came in with a stethoscope, put it on his chest, nodded to us and went out. I shook a bit, had tears at the edges of my eyes but was calm.
Sandy went outside to tell those waiting. I remember looking at Josh as he lay peacefully with the grey window light on his face, the delicate frost on the trees outside. I thought, "Well kid, you made your mark, you really did this well."
Two and three at a time, his friends came into the room. A few shook with grief and all shed a lot of tears, but I was turned away from them, stroking my son's hair. I told them the briefest details of how he died: his heart wore out, it slowed down and stopped, it was peaceful.
Focus on these seven words for a moment: bereaved parents have an indifference to life.
Psychologists and psychiatrists who have no direct experience with such a loss would prescribe medication, analysis, counselling. They believe indifference indicates suicidal tendencies, but that is not the case. It is a sort of lifelong tiredness. As one bereaved father said to me, "I just want to lie down beside her." I know what he means and I know him well. He is energetic in most things, a good father for his surviving child and a responsible husband. He will not purposefully give up living, but if his life should end soon through no plan of his own, he wouldn't be overly concerned.
I returned to teaching after several months. Initially nervous about resenting healthy, obnoxious students who had every physical advantage but weren't living up to their potential, I hid the brief times of anger.
Over the years, I have found myself becoming a better teacher, reaching out to the students more than ever. I wrote a book to guide them, Standards of Excellence: for Students of Life.
Sandy has had some difficult times, as all bereaved parents have.
She loved being a mother and was so good at it and then it was taken away. There was nothing to do, the doctors did their best and only the fantastic luck of having an X-ray of my son's leg four months before diagnosis could have possibly saved him – the tumour was already six inches long when they first saw it. After many stops and starts, she has found providing daycare to little ones the most fulfilling. She volunteers and keeps socially active.
We are more respectful to each other than we were before the diagnosis. I know of the hurt I went through and everyone grieves differently, but I know her pain is equal to mine. Whatever she has to do to maintain equilibrium, to get through the day, is acceptable.
Although this half-life we have is quieter and emptier, in some ways we are now better at living together.
And so it comes back to you, dear son. Here I sit in the quiet of the study, surrounded by books, tapping away on the keyboard, looking around the room and counting the photos of you: more than a dozen from your short, brilliant 16 years. This mountain of hurt and loss is now part of my landscape. I think of you often, your jokes and smiles and friendship. I can imagine part of you is in the delicate light of sunset at the unseen edge of clouds, beyond even the clouds I can see.
I will keep going, teaching, writing and trying to help others. Just as you bravely lived 22 months with a deadly disease, I will try to turn this into a meaningful experience. And, one day, I will lie down beside you.
Allan Wilson is a teacher and writer living in Lethbridge, Alta. His play, Walking Upright Through Fire, has been performed in Lethbridge, Calgary, Toronto and Saskatchewan. His book, Standards of Excellence: for Students of Life, was published by Blue Grama Publications. He is working on a novel and a screenplay.