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25 January 05. My first visit to Stewart Homes, an independent, for-profit assisted-living organization that may — may, with the intervention of the special-needs group — have a space for Walker to live.
It was founded 30 years ago by Alan Stewart, who was himself a foster parent.
I was terrified at the door. I know what it's like to enter a room of handicapped kids: I was always astonished by the symphony of whoops and yowls that rolled over me when I visited Walker at his old school. But this is different: This is their territory, and the one who has to measure up is me. I stumbled into five children in a single room, but so isolated from one another, so deeply private, they might as well have been in separate galaxies. Gaspingly sad.
There are about eight children in each house — bungalow-style; spacious enough for the pumps and wheelchairs, lifters and toys; the floors seamless, carpet-free, for wheelchairs. The children are twisted but self-possessed: This is their place, a haven where they are no longer oddities. The school is 20 minutes away by bus; the local doctor does house calls; there's a good hospital, a nurse on staff, a psychiatrist on call. One of the things Johanna doesn't like is the place's smell.
There's no room, of course. "Sometimes openings do come up in unpredictable ways," Diane Doucette, the director, tells us. I think she means that children die. I am happy to wait.
8 April 05. Office of the special-needs project. Seven years after I first broached the idea of getting outsiders to help us raise Walker, Minda Latowsky has found him a place. It's on the edge of Toronto, in Pickering, 40 minutes by car.
There are two mobile children there already: Kenny, 13, a tall, skinny kid who suffered brain damage in a near-drowning, but who can understand and make himself understood by fluttering his arms and vocalizing; and Chantal, who speaks and understands. Kenny will be Walker's roommate — a big-boy concept, terribly exciting. The typical beginning is two to four trial visits, with Olga [our nanny] staying overnight at the new house. "Then the move-in," Minda says. Then two weeks of no visits, to settle.
"It'll be months before you know you can put your coffee down, safe from flinging by Walker," Minda assures me. "But by then he'll be back at your place all the time."
Johanna seems at least numbed to our long-coming decision. But I'm a wreck. I've been drinking steadily, wandering the streets at night, even visiting strip clubs. Then I come home and climb the dark stairs in the quiet house and sit next to Walkie's bed. I burst into tears everywhere, in stairwells and the car and the basement and on my bike.
I feel as if the shape that he gave my life, this deep fate he handed me, has melted away. For what? For the sake of my own comfort? Because it was impossible to invent a new form of communal life we might have preferred? Because even then there is no such thing as a good solution? When I think of this house without him, my body becomes a cave.
The day I drove to Vestal, N.Y., to meet Brenda Conger and her family, Cliffy was waiting at the door. He looked like a more urbane, less afflicted version of Walker — curly hair, glasses, but slimmer and taller, CFC's Noel Coward. The Congers' Labradors, Henry and Jackson, walloped into the door. "Those dogs'll wreck you," Cliffy said, and laughed. It was the first piece of genuine conversation I had ever had with someone with CFC.
The first thing he wanted to see were photographs of Walker, his genetic cousin. Then he swayed over to help his mother tenderize the chicken she was cooking for dinner. Mr. Rogers was playing on the wide-screen TV in the background. Fourteen years old, watching Mr. Rogers; there were little signs like that, just hints. Cliffy was good for 10 smacks on the chicken, then had to stop, exhausted. That was when I noticed how slim his arms were, how glancing his attention could be.
He gave me a tour of the house. He seemed to prefer the second floor. "This is Mummy's offish," he said of the landing nook where Brenda Conger had changed the CFC landscape. "This is the new room," the office his father was slowly adding. He showed me the bathroom, and the shower especially, and the shower curtain most of all. "Keep that closed," he said.
We continued down the hall. "This is my daughter's room," Cliffy said.
"Your daughter? You mean your sister."
Parts of his mind were his own, while other pieces seemed inherited, as if he bought them pre-assembled off the showroom floor. Neurologists have described the same feature in the normal mind, the clip-in societal set piece — but in Cliffy it was slowed down and you could see how it operated.
His bedroom, his most private brain, was festooned with graphics of John Deere tractors, his great obsession — neat, useful, powerful. There was a John Deere tractor rug on the floor, tractor wallpaper, tractor curtains, a tractor bedspread. There were JD tractors on the light switch, his Kleenex box, his wastebasket; a JD tractor at the end of the chain on his ceiling fan.
We walked outside. While Brenda finished making dinner and his father and I talked about the wilderness days of CFC before anyone knew anything, and about how he had taught Cliffy to ski by walking the bunny hill in ski boots for two years before Cliffy felt comfortable enough to try it on boards — while we adults did that, Cliffy climbed onto his John Deere tractor, a full-sized, sit-down, yard-work model. He started the motor. Then he drove the tractor out of its shed and around the yard. Then he backed it, and its hitch-mounted trailer, into the shed. He did it perfectly.
"I can't do that," I said to his father. I suddenly had a mental picture of Walker picking grapes. Maybe Walker could pick grapes.
"He's a better parallel parker that any 18-year-old with a licence," Cliff said. It took four years to teach Cliffy to drive the tractor. He started by cutting the grass with the boy in his arms.
At 10:47, Brenda roused Cliffy from the TV. "Cliffy, time to go to bed."
"Mom," he said. Nothing delayed about that tone. "Why can't I stay up? I'm a teenager." He had the routines of normal life down. Between what he felt and what he had been told to feel was the real boy, still forming. Was that the gift of the CFC child — to be always forming and never formed?
When I came down for breakfast, Cliff and Cliffy had been up since 7 a.m., making their Sunday omelettes. Cliffy was wearing his SpongeBob SquarePants pyjamas.
He shuffled over. Wan wet light was filtering through the window. "Mr. Bwown, you want mushwooms in yoh omelette?"
"Ian," I said. "Call me Ian."
"Ian." Perfunctory. Names, irrelevant. Experience was all. "You want mushwooms?"
"Are you a mushroom eater?" I asked.
"Yeah!" he fairly shouted. I knew that bang of glee. Walker did that. "He's a mushwoom eater!" he called to his father.
He paused. "What about pickles?"
"No," I said, "no pickles."
"Whoa!" He looked at me with new respect, the kind you accord a fellow who stands against the orthodoxies of the age.
"You a pickle man?" I asked.
"Yeah!" Again the grunt of enthusiasm. Maybe that was why Walker did it too — when he felt we were equals.
All we had needed was an interpreter, a boy who spoke both our languages.
Part 2 continued on Chapter 5…