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When I talked to other parents of CFC children, they sometimes said surprising things. Eddie Santa Cruz in California cried non-stop when he talked about how happy his daughter, Emily, made him. She let him feel things. A woman in Washington, D.C., said of her CFC daughter, "She loves hot dogs, she loves anything with ranch dressing, and waffles." In the same breath, she said, "She has an incredible memory." These parents seldom complain, but they share a sense of foreboding.
In Vancouver, Fergus and Bernice McCann have raised their daughter, Melissa, for more than 20 years, virtually on their own. Fergus spent his retirement savings to buy a house for Melissa to live in for the rest of her life, but Bernice found it hard to be hopeful. "There is little laughter in this home," she told me one evening. "Our boys laugh, but they're not carefree. Sense of humour — Ferg used to have one, but it's pretty much gone. Our boys are 20 and 22. When they were 18, they were changing Melissa's menstrual pads. What 18-year-old should be doing that?" The problem was, no one else had offered to do it.
In Saskatoon, Julia Woodsworth lives with her mother, Pam, and father, Eric. Pam is 52. Julia is 19, has CFC and is incapable of living alone. She has to wait three years to get a dental appointment. "I feel like at every stage of Julia's life we've had to be trailblazers," Pam said. "But I haven't found there's been a real growth in some of the options where people with disabilities are concerned."
It is hard to ask for society's help, but it's impossible not to. "The model we're given is this idea of mainstreaming," Linda Pruessen said one day at lunch in Toronto. Her sister, Caroline, is globally delayed and in her 30s. She still lives at home with her parents, who are both 63. For them, arranging to see a movie on a Friday night is like planning a two-week vacation. "The idea is, get the person into the community. But that breaks down at some point. Because my sister is never going to be able to be part of the community. It's noticeable, for instance, that she's physically different. If you take her into a hair salon, she's going to get looks. Is that fair to her? Is it not reasonable to expect her to be able to get a haircut without weird looks? And who should monitor and adjust her quality of life? Do we trust the government?"
These are excellent questions. None of them, as yet, has an answer.
One afternoon, I visited a doctor at a famous children's hospital. She wanted to explain how doctors decide to save a sick child, even when they know its life will be compromised later on. The question had troubled me for years. Had there ever been a point in Walker's infancy when the doctors realized how hard his life would be? If so, they never mentioned it.
The doctor was an infant transplant surgeon; she knew life and death at first brace. Her hospital saved the lives of preemies born at 23 weeks gestation. The media called them miracles, but 80 per cent developed serious intellectual handicaps.
Ten minutes into our conversation, I noticed the doctor was crying. Maybe it had been a long day. "If we spend a million dollars when they're 24 weeks to save them," she said, blowing her nose, "then we have to spend the same amount when they are bigger. But when they're discharged, we ignore them."
I asked her why she was weeping. She said: "Because you see it all the time."
Walker was saved by medical technology. I am grateful, but under my gratitude lurks a terrifying question: What would have happened if nature had been left to take its course? We saved his life, but is it a life he finds worth living?
Saskatchewan farmer Robert Latimer asphyxiated his 12-year-old daughter, Tracy, in 1993. She was a 40-pound quadriplegic with the mind of a four-month-old infant. She suffered from excruciatingly painful cerebral palsy, and had three surgeries in 10 years to reform her legs and spine; a fourth surgery was planned to remove the top quarter of her right thigh. Because her parents refused the surgical installation of a feeding tube, she could take nothing stronger than Tylenol for pain, for fear her breathing would stop. Her father couldn't bear to see her in agony any longer. He was sentenced to life for second-degree murder. The court cited the fact that Tracy liked the circus and smiled when the horses trotted by, as proof that the value of her life outweighed the burden of her pain. I remember reading this after Mr. Latimer appealed his conviction and thinking: She smiled when the horses trotted by? Big fucking deal.
There is no excuse for murder. But there have been nights, after hours of trying to stop Walker from smashing his head, when I imagined I understood Mr. Latimer's desperate reasoning. Medicine had kept his daughter alive, but 90 per cent of her life was agony. How much of her parents' lives had been shaved away, witnessing that pain? If you added the losses up, it wasn't long before the equivalent of several healthy lives were draining away to mind one hopelessly broken girl. Mr. Latimer cut his family's losses and put Tracy out of her pain. So I explained it to myself. It was murder, illegal and unconscionable. But the logic was no more pathological than a crop rotation. Why did he feel he didn't have a choice?
"I think, as a family, I have a lot of empathy for the Latimers," Pam Woodsworth told me from Saskatoon, on the day last week that the National Parole Board denied Mr. Latimer's application for day parole. "The big remaining question for me is, why isn't our province on trial? What he did was an act of despair. That family wasn't getting the support they needed. I'm really interested in how, as members of a civil society, we're all complicit in Tracy's death."
Now that the Ontario government is keen to be seen to be eliminating surgical waiting times, if I want a new knee to ski better, I can have one in six months. If I know the right doctor, I can probably have it in two weeks. Why did it take seven years of looking and asking and begging to find a decent place where my son would be adequately cared for? And Ontario is a progressive province where the handicapped are concerned.
I want to blame the doctors, but what choice did they have? Bruce Blumberg, one of the first geneticists to identify CFC syndrome, has counselled parents on genetic dilemmas at Kaiser Permanente hospital in Oakland, Calif., for 30 years. With the parent of a sick child, who has likely been riding the Internet all night and is full of fear, "more often than not, to achieve a balance point, I need to emphasize the positive. At the same time, the parents are keen to hope. And it's easier to be positive. It's easier to smile. I've been through stuff with patients. It's hard. So I think for doctors it's avoidance at times."
But then why leave parents with a child no one can care for on their own?
The problem, Dr. Blumberg said, lies in our unwillingness to accept that a handicapped life has real value, especially if the value is subtle and hard to quantify. "Families often do find raising a handicapped child a gift, despite the hardship," he said. "It creates new relationships, reveals new capabilities. The trick is to give up the idea of the potential child and accept the actual child."
Dr. Blumberg is familiar with medical catastrophe. He was blinded in one eye as a boy while helping his father spread fertilizer. He went on to become a doctor via some of the best universities in the world. "It's arrogant of us to assume that these states are inferior to the normal state," he said.
"If you have an IQ of 60, that's a serious handicap in our society. But if you're a migrant farm worker, it might be fine, plenty. So who is to say that the state of non-verbal rapture you describe in your son — who is to say that that is inferior? Who is to say that? We're arrogant enough to believe that sentience is all that counts. It's not all that counts. A sequoia is not a sentient being. But they count. There is nothing more magnificent. It doesn't require me to think about it to be in awe of it. I don't want to minimize the difficulty of raising a handicapped child. It says something about the place we have reached as a society that doing so creates a serious handicap in these contexts. But it's just a mistake to think of them as lesser than. There's no lesser than. There's just different from. It isn't just great minds that matter. It's great spirits too."
Part 3 continued on Chapter 4…