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The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.
I remember how proud I was the first day he went to school. Play and Learn was a daycare program that integrated normal and disabled children. You could spot the parents of the delayed: They were the ones who looked as if a bomb had just gone off in the back seat of the car. They were starved for contact and longing to tell the truth. One afternoon, I ran into a woman whose severely disabled 14-year-old daughter had died two years earlier. "Do you know the first thing I did — on the way back from the funeral?" she said. "I said to my husband, 'Pull over. Let's have sex.' " She later divorced him.
Walker enjoys exploring objects by manipulating them. He turns objects through his fingers as he looks at them, and has also begun to bang objects together.
Play and Learn's theory was that integrating normals and the disabled would sensitize the normals and inspire the delayed. The school boasted a full-time sensory integration therapist (CFC children are often overwhelmed by their senses and have to be conditioned to them) and an occupational therapist, to teach basic concepts such as sociability — sitting down with others at lunch. To my surprise, Walker became bolder, more outgoing.
The staff (all women) were dedicated teachers of the handicapped, geniuses of the heart who saw hope in everything.
Typically, he produces open vowels and consonant-vowel combinations — which may include any of the sounds [b, n, d, n, l, y] with an "ah." Although he will not initiate an interaction, he enjoys having his peers around. When a peer is holding his hand, he seems to be content.
The provincial government in Ontario, keen to show it was serious about education, insisted that all children be graded. Grades meant standards. The first time Walker arrived home with a report card in his backpack, we learned he was improving at math. Math! And improving! We laughed like hell, and then we kissed him and said, "Well done, Walker! Two plus two is four!" We did that for a long time, held on to it like a rare, delicious treat. Not that we believed Walker could do math as we defined it. But it was something funny about our boy that anyone could appreciate, a detail of his life that made it out from under the soundproof curtain.
What I couldn't tell was what the routines meant to him. Did he know he was "painting" when the teacher was guiding his hands? He had a friend, Jeremy, but did he know what a friend was? He sat at the table with the other kids for Snack — a time named Snack, I loved that — but did he feel the communal buzz? What went on inside that thickened skin, behind that swollen heart? I didn't care if he never threw a ball or tormented his sister or skied beside me or told a joke or dated a girl (though I would love it if he did). What I cared about was whether he had a sense of himself, an inner life. Sometimes it seems like the most urgent question of all.
Throughout these years, on half-sleep, my wife and I fight a lot. It's mostly the same argument. It goes like this: In the middle of the night, though it's Johanna's turn with Walker — and it could easily be the other way around — I can't sleep and head downstairs to read. Five minutes in, I hear Johanna: "No, Walker, no!" A minute later, she appears in the doorway of the living room — naked, brown (even in January), exhausted. Walker has been up for three hours and has just head-butted her and erupted with laughter. "Can you take him?"
I sigh — a mistake — and — another mistake — say, "I had him last night for three hours straight in the middle of the night."
"Forget it." She stalks off.
I follow her upstairs, recanting.
"Never mind! Sorry I asked!"
But I get to Walker's room first and lie down with him. By now my poor wife is so tired she refuses to let go. She shouts, I shout, I close the door. She comes in again, so I close it again and bar it with my foot. I'm not exactly rational. When I open the door, I can hear Hayley asking what's happening from the bottom of the stairs. I begin to apologize profusely. It's not entirely sincere, but sometimes in these irrational, terrified battles — will I ever have a normal life again? — it does the trick.
But there are other times too — moments of unstoppable happiness. Reading the paper next to a lake on a deck chair with Walker in my lap, laughing delightedly as I swear at the news. The four of us in bed together on a Saturday morning, Walker on his knees, towering for once over us all, and never happier. This is something, you see: Every time he is happy, he is as happy as he has ever been. Hayley, a delicate and skilled ballet dancer, twisting with Walker to music on the stereo, Walker on the moon with happiness. Twenty minutes from his life. Everyday occurrences for a normal child. But I know their true value.
Shortly before Walker turns 2, we hear about a CFC study being conducted at the famous Children's Hospital of Philadelphia. We drive 10 hours. It isn't until the end of a day of examinations that we meet a doctor who tells us something we don't know. His name is Paul Wang, a developmental pediatrician.
Dr. Wang conducts a series of tests. He shows Walker some line drawings, a light, a puzzle; Walker throws them on the floor. After an hour, the doctor is done. Walker wanders over and climbs into my lap.
"As you know," says Dr. Wang, a slim man with a high forehead and a quiet voice, "there are three general levels of cognitive delay, or retardation — mild, moderate and severe, sometimes called profound."
"Which one is Walker?" Johanna asks.
"If Walker continues at his present rate of development, then he might be diagnosed with moderate mental retardation as an adult."
"Moderate?" Johanna says, and puts her hand to her mouth. She is already crying. (I hope I held her hand.) "I was hoping for mild. Will he ever be able to read? Or drive a car?"
"I doubt it." This is bad news. Moderate retardation is still catastrophic, and there is nothing to say it won't get worse as he gets older. He will need lifelong supervision, support in his living arrangements. "At this point, little definitive information is known about children with the CFC syndrome." Dr. Wang judges Walker's overall development to be at the 10-month level. Ten months. Less than half his age. "As he gets older, of course, the differences will become more noticeable."
Dr. Wang turns to me. "Do you have any questions?"
"Just one. For the past few summers, we've rented a cottage in Georgian Bay, a couple of hours north of Toronto. It's a very remote place, very quiet. An island, no one around but us. Walker seems to love it. It changes him, calms him. It means a lot to me, that place, and how it changes him. Will I ever be able to explain all that to him?"
Dr. Wang shakes his head. "Not rationally, probably not. But" — he stops, thinks — "it sounds like he already understands it." Another pause. "The Buddhists say the way to enlightenment, to pure being, is by getting your mind out of the way. I'm not trying to be trite, but Walker already knows how to do that. He is pure being. He may be developmentally delayed, or moderately retarded, but in that way, he's already miles ahead of most of us."
This is the first time someone suggests Walker may have a gift the rest of us don't.
Part 1 continued on Chapter 5…
