And not because of what they mean. Especially in delayed CFC children, language can have a plastic quality, as if stuck on from the outside. I don't need Walker to say, "I love you," to know he does. But if he spoke a word, it would mean he wanted something. Desire is intention. Intention is hope.
When Walker was 1½ years old, my wife and I sat next to one another at the kitchen table and filled out the MacArthur Communicative Development Inventory. It was eight pages long. According to the inventory, Walker understood 115 words: Are you hungry and Open your mouth; kiss and wet; yucky and you and breakfast and moon. Good, but not happy. Dar k, but not broken. Even sky. It helps to remember, of course, that it was Johanna and I who filled out the form: We saw his brilliance everywhere. But he actually said nothing. Johanna and Hayley have dreams to this day in which Walker can talk like a trial lawyer. They wake up exalted, filled with excitement. In my mind, we chat non-stop. But in actual life, my son can't speak.
So there were times in the beautifully appointed and deliciously organized Hess house when I couldn't speak either, for envy and sadness. I wanted to get in my car and on a plane and fly straight to Walker. But for better programs, cleverer doctors, more money - so I told myself - but for being born five years too soon, Walker might today be as fortunate as Daniel. What if one of us had stayed home, not worked?
Every parent of a compromised child knows this secret envy, mines its thick seam of guilt. It's no more reasonable to say that one parent has an obligation to stay home than it would be to insist that Amy Hess had an obligation to go to work. My wife and I did everything every doctor and medical report ever suggested; we had the ready advice of Toronto's Hospital for Sick Children and Bloorview MacMillan Centre, two of the top pediatric institutions in the world. But nature was stronger.
Kate Rauen's identification of the CFC gene means, technically, that a fetus could be tested for CFC in utero and aborted. All this pain could be avoided. (The disease is so rare, however, that routine testing is unfeasible.) Amy Hess won't even think about that decision.
"I wouldn't change having Daniel," she insists. "But I wouldn't choose to have more children who suffer." She may adopt another special-needs child, "because at least then you don't have that guilt component, of bringing such a child into the world." She still blames herself for her son. She does not blame the world for the way it treats him.
Daniel, though, is freer. He often approaches strangers on the street. "Hi," he says. "Do you like me?"
That's the real question. The next one ought to be: How much?
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.