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For seven years, my wife and I talked about whether our handicapped son, Walker, should continue to live at home, whether we could keep going on half sleep and half an attention span. Or, to be more accurate: For seven years, I tentatively raised the subject of Walker moving into a home, but then neither of us could bear to think about it.
All that time, we barely lifted our eyes from Walker, wondering if he would talk, or eat on his own, or speak, or hear or see properly, or stop hitting himself compulsively, or live anything like a normal life. The answer was always no. There wasn’t even anyone to compare him to. His illness, cardio-facio-cutaneous syndrome, a random genetic mutation, afflicted about 100 people. But they were scattered at random in Australia, Denmark, Britain, Japan, the United States. The nearest Canadian case was in Alberta. We were in Toronto.
There was comfort in our isolation. We could advance at our own pace, live by our own standards, a rare thing in an extrovert’s world. It troubled me that my son couldn’t speak, but we understood him anyway. We defined each other. Sometimes it was enough.
And sometimes it wasn’t. By the summer of 2005, the need for a new living arrangement for Walker was pressing. He was bigger. Johanna and I were older. His sister, Hayley, was becoming a teenager. The prospect of doing nothing but looking after my broken son all my life was crushing. My unwillingness to be satisfied doing that felt deplorable. There were assisted-living possibilities in the offing — we knew all the stories about parents of severely handicapped children who turned such opportunities down, then waited years for another.
The following spring, a scientist in San Francisco isolated three genes that caused CFC syndrome. That, too, seemed promising. A year later, in the summer of this year, I decided to take a drive across North America, to meet the various faces of CFC, the scientists and the sufferers. Thinking back on it, it was another way to hold on to Walker, even as we were letting him go.
Emily Santa Cruz is hard to forget. She was the first person with CFC, other than Walker, I had ever seen.
She was nine years old and in her mother Molly’s arms, on the porch of their blue-and-white house in Arroyo Grande, halfway down the coast of California. Arroyo Grande is where the industrial farms of the dry-roasted Salinas Valley slip down to the cooler coast and the Pacific Ocean. It was like dropping into a new, more sympathetic atmosphere.
Emily had curly, black, standard-issue CFC hair, like Walker; slanty CFC eyes, like Walker; knobby CFC fingers; thick, brown CFC skin. I couldn't stop staring. Like Walker, she was spindly, and couldn’t speak, but she could focus more and wasn’t as shy. It was a relief to find someone like my son, but a shock to see how stark the syndrome really is. Black-brown eyes; a grin as wide as a fender.
Molly invited me in and asked to see some pictures of Walker. Then we talked non-stop for about eight hours. Even their house looked like ours, every surface cleared 18 inches in, as far as Emily could reach; like Walker, she loved to throw things on the floor. Toys were scattered across the living room, the artifacts of her morning.
Emily was luckier than Walker in some ways — she could eat by herself — and not so lucky in others. There was a list on the fridge chronicling her seizures. It was pages long, single-spaced and daily.
Sometimes Emily got out of her chair and crouched down on all fours next to us to peer at a toy. Sometimes she scrabbled a patch of wall with her fingers. The same squawks of excitement, the same peeps of desire.
Everything Molly told me was familiar. Emily liked to sleep without a blanket. For the first three years, she woke up every night, three times a night. “I think neurologically impaired kids like to get up at 3 or 4 in the morning,” Molly said. Their lives were ruled by medical appointments: occupational and speech therapy twice a week, orthopedics every three to six months, a cardiologist annually, ophthalmology twice a year, four times to the neurologist.
Molly was 45. She had a matter-of-fact way about her, the result of nine years of caring for Emily all day followed by evenings of work at her family's restaurant in nearby Nipomo. Her husband, Ernie, was 56. He was a logistics specialist for a company that made a tire sealant named Slime. When he got home, he played with Molly. “She loves her dad,” Molly said. Leanne, Emily’s older sister, was 18.
After we had been talking for an hour, Emily began to warm to me. She put her face two inches from mine and examined my notebook; I drew a picture of her and she looked at the picture and coughed, then laughed at her coughing. I rubbed her back: It was skinny and bony, like Walker’s. She clapped her hands and climbed up into her chair again and began making a brrrt-ing sound between her lips, which she found even more hilarious than I did. She was nimbler than Walker, but slipped off into the same private, unreachable places. Molly spoke to her as she would to anyone else.
“Do you think she understands you?” I asked.
“I don’t think she understands a lot,” she said. “But she’s starting to understand. Especially at school, with the routine of every single day.” School was due to start in a week. When Molly mentioned it, a hungry look crept onto her face. Emily at school meant a chance to sleep in.
From a notebook I kept:
25 November 03. A call from Walker’s school. “We’re at some kind of crisis point,” Alanna Grossman, the principal, says. He’s gone from biting himself to punching his head, in addition to his regular circus of complaints.
We meet at the school at 9 a.m. Present are Grossman; Walker’s two young teachers, Thomas and Dean; a psychologist from the school board — a strict, punctilious woman in a tartan bib dress; two educational assistants; me; and Johanna, still in her pyjamas under her overcoat. An army, to care for a boy.
“He needs stimulation,” the psychologist says, by way of explaining why he hits himself. How she knows this I have no idea. “We want his hitting to be more of a choice.”
They all meet about Walker once a week. He's endangering himself eight days out of 10. “He can follow routine, but gets upset if it’s imposed on him,” Dean says. “Sometimes being firm works.”
“But at the same time we want him to choose,” the psychologist interjects. I want her to choose another profession.
“I refuse to believe this is his personality,” Johanna says. “And that’s why I'm so frustrated at not being able to create a communication system for him.”
Tartan-Bib: “Is he too dependent on holding?”
This is what I think is going on: Walker wants to be reassured that he’s a human being. He hates how strange he is. Now the psychologist wants to deny me the only way I can tell him he’s not.
Part 2 continued on Chapter 2…