The Boy in the Moon: A Father's Search for His Disabled Son (27 page)

If my son is trying not to succumb to pain and suddenly finds it bigger than him and is stricken with grief at his defeat and a deeper, graver wave of crying erupts from within him—that too makes me cry. Why? Because it’s painful to watch? No: his pain makes me angry. What makes me weep, I suspect, is the hidden optimism in even that crisis: at least he had hopes of beating that pain, was expecting that it might pass. A pal from Winnipeg put it well the other day, apropos of something else: at the end of the day, there’s always a cup of grog for the undefeated.

I think that’s what my steady weeping is about. Walker has the same effect as the ballet: they both can reveal the larger shape of the world. He is one of the pools where hope resides.

So to anyone who wonders about the potential value of a severely disabled child, and the possible meaning of a penumbral life passed mostly in pain, that’s one possibility. What if Walker’s life is a work of art in progress—possibly a collective work of art? Would that persuade you to take care of him for me?

I think about him for the first time each day before breakfast, at quarter to seven in the morning as I make my daughter’s lunch for school and come upon his feeding paraphernalia in the back cupboard in the kitchen, or when I notice the still-mangled louvres in the blinds on the front door as I get the paper. There are the photographs of him on the fridge and on the cereal cupboard, and on my bureau as I get dressed; there are the magnets he’s obsessed with on the fridge. His empty bedroom calls out from the top of the stairs. Every time he comes to mind I remember that we couldn’t keep on with him, and my hands and chest go cold; think of how long it has been since I saw him last and when I will see him next; remind myself of what I have to do the next time (doctor? insurance? tests?); calculate the number of days he has been away, feel okay or reprobate about the number; think about the shape of his head; think about his eyes, if he might talk; calculate when in my week I will have time to drive out to get him, and what time of day the traffic will be least onerous; think about arranging Olga; think about Hayley, alone with him in the world. That’s more or less every time I think about him. For a boy of so little purpose, he makes me think a lot.

But after Walker moves into his new home, I gradually forget the rhythms of his sleep. It makes me weep to say so: how did I let him down that much? And what will raise him up again? I forget about the way he insists on thumping his head, the wall, my head with his head, until he comes home for a visit and reminds me all over again. I forget how gradually and inexorably he wakes up, ever so slowly torturing whoever is lying with him with the prospect of his impending consciousness, repeating the same bonking of his head or the same scraping of his hand (hard, against something harder), the same murmur or moan, until finally he breaks through, often unhappily, into wakefulness. I forget how steadily he can hit the wall, four and five times a minute, for twenty minutes, without opening his eyes, and how quickly I leap into action, to keep him under, asleep. I forget how calm he can look nevertheless in the course of his surfacings, the seamlessness of his eyelids, the smoothness of his brow, how handsome and deeply calm even my small bent boy can look. How convincing his fake calm can be. I forget how infuriating he can be, when he resists my will. Last summer, at our friends’ remote lakeside cottage, he stayed awake until quarter to three in the morning. I first tried to put him down at quarter to eleven, when Johanna said, “You need to take him off Olga’s hands, she’s had a long day.”

I pushed the usual wave of resentment back into my chest. I removed his helmet, lifted the dead weight of him into the bed, collapsed beside him. I sang my store of songs to him—the only songs to which I can actually remember the words, “Amazing Grace” (four verses, one made up), “
Amore
,” “Are You Lonesome Tonight?,” “Old Man River,” plus a repeat of “Amazing Grace,” this time to the tune of “The House of the Rising Sun,” the way the Blind Boys of Alabama sing it. I did all that twice. That didn’t work. I cajoled him, clicked, joked, laughed, held him down, whispered in his ear, rubbed his head, his back. I did everything I had ever invented before. In reply he attempted repeatedly, by which I mean three dozen times, and with pathological enthusiasm, to conk my head with his head, as hard as he could. He enjoyed a 40 percent success rate.

Finally, after four hours, getting up twice in the process to listen to the night and patrol the now-deserted screened-in porch with him, after a particularly mean-seeming crack to my nose, I gave him a medium-light smack on the backside, and swore at him. “All right, you little bastard, that’s quite enough of that!” is what I growled. I knew I was in the danger zone where, as the advice books say, one must step away. I thought briefly about waking up one of the others, Johanna or my host, and begging for help. (Never Olga: she worked hard enough during the day, the nights were ours to solve.) I didn’t, of course, wake anyone. I hardly ever do. But the option was there. I had somewhere to turn. Alone, with no one to fall back on—I don’t think about that alternative.

Instead, I gave him the whack and told him to behave himself. Whereupon he turned on his side, leaned up on his elbow, looked into my face as if he were Milton Berle, emitted a loud, cackling “HA!”
and rolled over and went to sleep
. He just wanted to show me that now he can outlast me, that he’s up to whatever I can throw at him. I don’t know how other, normal twelve-year-old boys reveal that moment to their fathers, but that is how Walker told me. He used what he had.

But how do you know that is what he is trying to tell you?, someone might ask. How do you know you aren’t imagining all these messages between you? If he can’t talk how do you know you aren’t making this up? The answer is, I don’t. But the average father doesn’t know a lot of the time if he and his sons aren’t making up their bond either. The frame of any human relationship exists behind a veil of words, and sometimes sounds like something other than it is. Only a fool, or someone intent on disappointment, pretends otherwise. Walker and I don’t compound our confusion with words. We prefer noises.

After Walker had lived in his other house for two years, I had a dream about him. He was in his new house and I was visiting. He was very, very happy: he still couldn’t speak, but he understood everything and could instantly convey all he wanted to say in murmurs. After our visit, he walked me to the door of his house to say goodbye, and stood there, beaming. His housemate Chantal, or his other friend Krista Lee or some combination of the two, was standing behind him. It was clear she was his girlfriend. That pleased me: I knew he had finally found someone to love and someone to love him, not just in the public way everyone loves Walker, but in a way only he could understand—his own private love, at last, to give and receive. And we both knew it. He smiled as I said goodbye, and looked directly into my eyes, and nodded, gave me his blessing. He had forgiven me for his life. But in the end it was just a dream.

He is becoming a different boy there, in his other house. He has a life of his own, something I thought he’d never experience. Intellectually, he’s an infant, always will be; he reminds me what it’s like to be with a baby. But while I think Walker will never change, he changes all the time.

On his last trip home he refused to do anything I asked, refused to pay attention to me for two days: banged the table, inspected the microwave, played with Olga. He was behaving like a teenager, holding out. On the evening of the second day, after I had asked him to come and see me thirty times, he tossed me a bone. He sat down on my knee; looked at me; and slowly, ever so slowly, gave me a half-grin, while peering off toward his next destination. I have to say the word
knowing
crossed my mind. He seemed to understand precisely what he was doing:
Time to placate the old man, who obviously needs placating—don’t you, old man
.

I never expected to see him become independent, to have a life of his own, but he has and does. The latest development, the workers in the house tell me, is that he shouts “Bus bus bus!” when it arrives. I find that hard to believe. But there have been other shifts too, subtler changes in his current.

There was an evening in November, six months ago as I write this, that I remember a little too clearly. I arrived at six to pick Walker up and bring him home to us. As I pulled up into the driveway, Colin, the oldest boy in the house, was staring out his bedroom window, which was to the right of the locked front door. He was standing so close to the glass, his breath was condensing on the window, next to his Toronto Maple Leafs sticker. Colin was a shy guy: small, thin, twenty-five (that was a shock—he looked sixteen), permanently furrowed brow, misshapen face, bent body, understands but does not speak, devoted to video games, and very decent: he would let Walker stand between him and the TV screen where his video games were projected, waiting patiently until Walker moved away. I always said hello to Colin, walked over and rubbed his back, treated him as the oldest, the leader; it was the only thing I could think to do, the only way I could connect without feeling like an idiot. He seldom made eye contact and kept his head down, but I noticed he always smiled quietly if I said his name; and when I called his name as I left, which I always did, he smiled again, secretly glancing up. His shyness, his deep hiding, his shame, his pleasure, his gratitude, his solitude, his longing—all there in those moments.

A few weeks passed. Late on a Monday in December, Trish Pierson, Walker’s night worker, telephoned my mobile. That was unusual. “I just thought you might want to know that Colin’s near the end,” she said. “Because you have a thing with him.” He had only one lung—I hadn’t been aware of that—and now it was failing. I didn’t find words to say. Colin lasted three days, and then he was gone. Now no one minds or doesn’t mind if Walker blocks their view of the TV.

Walker came home to us a week later. I walked in the door after work and Olga told Walker I was home, and he came over to say hello—which was unusual; normally he doesn’t do that, you have to call him. He seemed not sad, but expectant. If something could have been on his mind, it would have been, if you understand my meaning.