The Boy in the Moon: A Father's Search for His Disabled Son (12 page)

April 8, 2005

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
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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, tiny for eight years old, 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 staying overnight at the new house to show the other workers the ropes with Walker, while Johanna and I are at work. “Then the move-in,” Minda says. Then two weeks of no visits, to settle
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“It’ll be months before you realize you can put your coffee down, safe from flinging by Walker,” Minda assures me. “But by then he’ll be back at your place often.” Johanna seems resigned, or at least numbed to our long-coming decision. But I’m a wreck
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I feel as if the shape that he gave my life, this deep fate he handed me, is melting away. For what? For the sake of my own comfort? Because there is no such thing as a perfect solution? When I think of this house without him, my body becomes a cave
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As the day of Walker’s move to his other house approached—June 25, 2005, at the end of the school year—I sank into what I realize now was a sea of grief. I went to the doctor complaining of stomach cramps: his tests found nothing. Grief—“the curtain of silence,” C. S. Lewis called it—was a shroud that separated me from other living people. It seemed impossible to me that anyone could understand our plight: if they didn’t think we were monsters, they had to think us fools. Sometimes on the nights when it wasn’t my turn to put Walker to sleep I went out to bars in the neighbourhood, but all I did there was drink, sitting in one place and keeping to myself and listening to conversations, trying to overhear a scrap of the normal. I hoped someone would talk to me—thankfully no one ever did—but I wanted a shred of my old callow life back.

Sometimes I even went to strip clubs. I did this at night, on the way home from driving our nanny Olga back to her apartment. I suppose I needed to feel something, anything other than the loss of Walker, however predictable and reptilian—and my lust, at its most basic, was that thing. In a strip bar you can sit beside your own desires for a while, the reliable ones and the surprises, and remind yourself of the old habits of this stranger you have become.

I missed his strangeness most of all. Before Walker, I imagined that the parents of a handicapped, disfigured child ventured out in public with trepidation: that the prospect of being looked at and ogled and even laughed at was agony. But the truth is, Walker loved to ride in his stroller, and I liked being in the street with him too—taking the air on the boulevard, chatting to him about the sights we passed. He responded to the sound of my voice. “Look here, bub, here’s a big dog. And a girl, his owner. Look at her big fur hat”—that sort of thing. It made him laugh, and often he appeared curious—my favourite of his expressions. People watched us back, often couldn’t help themselves from peering at Walker’s lumpy face, his just-off features, his squirming tight body. They had a number of
ways
of looking. There was the glance-and-look-away: that was most common. Then there was the look-and-smile, to assure us we were accepted, that no stigma existed. Some people were openly horrified. Children stared bluntly, and some parents didn’t even tell them not to. I have to admit I thought of them as animals, curs in the street.

Sometimes pregnant women, or youngish women who I imagined had begun to experience the lust to have a child of their own, came upon us clattering down the street, Quasimodo and his muttering minder, and clouds of alarm passed over their pretty faces. Then they sought out my face, to see if there was some hint in me that I might be the father of a kid like Walker: I could see them thinking they would be able to spot such a father. But I am quite normal to look at, and the clouds of alarm returned, and lingered. Deviance holds power over us because it strikes randomly.

The staring used to bother me. The worst offenders were teenage girls, who can’t stop both hoping and fearing the entire world is gazing upon them in rapture—girls who want to stand out and fit in at the same time, a duplicitous transaction Walker doesn’t allow the two of us. One spring, at the opening of the baseball season, I took him to see a Toronto Blue Jays game. His entire school at the time—the one designed exclusively for disabled children—came along: thirty bent and broken bodies, beeping and whooping and squawking in wheelchairs and carts, travelling in single file along the sidewalk for twenty blocks through the centre of the city. Now that was a procession that everyone watched. We broke up when we arrived at the stadium, and I wheeled my boy through the crowd.

It was School Day, or Bat Day, or some unimaginable combination of the two, and the stadium was overrun with teenagers. Again and again an identical ritual repeated itself: some tall thirteen-year-old girl in a pink or blue pop top and a white miniskirt and flip-flops, the leader of a tiny gang of three always shorter girls dressed exactly the same way, would spot Walker and me coming at them. The leader would lean over and whisper to her gaggle. Then they would all stare. Sometimes one would laugh. More often they would veil their mouths with their hands and pretend to hide their shock. I preferred open laughter to their smirking politesse.

The point is, I have known what it is like to be stared at, to be an object of fear and pity and even hatred. I hope Walker can’t see it; he seems to ignore it, and gradually he taught me to ignore it as well. These days we stroll the boulevards as if they were ours. Walker has made me see how many of the rules we live by are simply made up.

I recall the actual day of his departure only through a baffle, as if my head is stuffed with pillows. The drive up—Johanna had carted his clothes and toys on several earlier trips—was quiet, a sunny Monday afternoon. We all piled into the house and half a dozen of the women who worked there welcomed him. Chantal, the eight-year-old, took him in hand right away. A tour of the bedroom and the rest of the house; the garden; details of his meds, feeding, instructions on the operation of the pump, all simply to reassure us. We stayed about an hour. Then we hugged and kissed him and hugged him again, me and Olga and Johanna and Hayley, and then we did it again, and then we forced ourselves to leave, saying goodbye loudly to all, trying to keep moving, trying not to stand still in case what we were doing caught up wth us. The ride back downtown without him, not sad or angry but extremely alert, as if we were driving through intense rain.

It was a good house, yes, of course, excellent. We reassured each other about that. We didn’t go out that night, but instead stayed in and watched TV, marvelling at the quiet, at the velvety luxury of all the time we suddenly had. Huge folds of time that felt like curtains in the air. We could watch TV! Anything we wanted! And boy, we were looking forward to going to sleep. I kept thinking he was down in the basement playroom with Olga, where they often hung out—and then remembered the basement was empty, there was nothing below any more, just the white walls and the grey floor, no strange boy adventurer exploring its corners and shelves and cupboards over and over again, as if he knew they contained treasure, however hard it was to find. The pirate boy, in the bowels of our small home. He wasn’t there any more. To this day I can’t think of that night without a strange still pause coming over me, without wanting to mentally stick my fingers in my ears, so I can’t hear his laughing, peeping, quacking voice.

We settled into the new routine. Walker was living in his new home: he came back to us every ten days for a three-day visit, plus long weekends and holidays. Minda called frequently to see how we were holding up. I was on the lookout for a hint of disapproval. Minda, after all, was a mother herself, and I couldn’t believe she didn’t somehow disdain, in her private mind, parents who couldn’t look after their own children. Because that streak lived in me. But I was wrong: one afternoon nearly two years after Walker moved out, Minda explained what she had seen in our house that day she first came to meet us. We were having coffee in the suburbs, on our way back from one of the care-planning meetings we have about Walker.

“Physically,” she said, “you and Johanna were shadows of yourselves. Here were two people who loved their child, who were trying to function as well as they could, who were working as well, who had another child as well. You think about it in future terms: should Hayley suffer as well? The emotion was palpable. And the struggle I could see in you and the pain you carried around—the roof was coming in.”

She stopped talking. I refilled my coffee.

“You weren’t people with an imaginary complaint,” Minda continued. “Every family has something. It’s just a question of levels, and how much a family can cope with. And how each family responds. And you have to be able to ask for help. Because wanting it and asking for it is a big difference. Because it means you can’t do it on your own any more. Who wants to admit you’ve had a child and can’t raise him?”

February 26, 2006

Picked Walker up today. He seems to have not one but two girlfriends: Chantal, who is now wearing a body brace for her scoliosis, and Krista Lee, a lovely fourteen-year-old girl in a wheelchair whom Walker adores. Chantal is bossier and pushes herself into Walker’s ambit. Krista Lee waits, and so he goes to her
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Katie, one of the phalanx of men and women who work in the house, has even devised a way to stop Walker from hitting himself, without resorting to the foam helmet he hates—empty Pringles cans, reinforced with tongue depressors and electrician’s tape and upholstered in bright fabric. The inside ends are stuffed with a ruffle of foam rubber. The cans slip over his arms, to his shoulders: these prevent him from bending his arms and levering his punches up to his skull. After years of misery, relief in a few cents’ worth of cardboard
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I am still ashamed when people ask why they don’t see Walker as much any more; I can’t admit he lives mostly here. Johanna’s more phlegmatic: she resisted his departure, but now that she has agreed to this arrangement, she backs it. “I feel as if he belongs to others now, as well as us,” she said the other day, as we sat at the kitchen table, luxuriating in the newspaper. (Having the time to do so still feels as exotic as visiting Las Vegas.) He’s certainly settling in. Not
long ago Olga and Johanna drove Walker back “up there,” as I call it, after a weekend here at home. Walker made a dervish entry, knocked over the trash can and buried his head in the breasts of Trish, his night worker. Then he took Johanna and Olga each by a hand, and gently but firmly escorted them to the front door. He wanted them to leave. Strange bout of liberation!

He’s on a new dose of risperidone and a new drug for reflux, and his moods are more even. But it’s his emotional confidence that’s leaping forward. Living only in our world, I’m sure, he saw his limitations everywhere. In his new vacation home, as I think of it, surrounded by peers, he’s as solid as anyone. I hope that is the gift we gave him by giving him up
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