The Boy in the Moon: A Father's Search for His Disabled Son (28 page)

I didn’t know whether to mention Colin. Had he noticed? Trish didn’t think any of the residents were aware of Colin’s death, but I wasn’t sure.

I thought: I’ll say something anyway. He was standing next to me, and he wasn’t moving from my arms, from the basic comfort. “Hello, Beagle,” I said, because that is what I always say, trying to be consistent, “how are you?” I rubbed his shoulders briskly as I always do, and put my head at his eye level, and (lightly) bonked his helmeted head with my unhelmeted head, and said, “
Alayalayalayalay
,” which is what I always say, and then I pulled him closer and put my mouth beside his ear. It felt important, but also like I was talking to a brick. I said:
I was sorry to hear about Colin
and
Do you miss him by the TV, hunched on that little stool?
and
I know you were pals
and
He let you stand in the way. That’s a nice thing to do for someone, you know, not to mind if you stand in the way
and
Colin never looked at anyone but he always knew when someone was there
,
right?
and
He always knew you were there
. Then I stopped, and waited. Walker was looking right at me. I said, a little louder,
It might be better for him now
,
he was in a lot of pain and very sick
, and
Remember how when we called his name or said hi he never looked up
,
but we always caught him looking afterwards
,
looking and smiling
,
how grateful he was
? and
He was a good guy
,
Walkie
, and
He was glad you were his friend
and
You must miss him, I know it’s sad, but don’t worry, sometimes you have to feel sad
. I said other things, but I can’t remember them now. Finally I said,
I don’t know where he is now, but that doesn’t mean you can’t remember him. Anyway, Bubby, I’m sorry your friend died
. Then I rubbed his back again. He seemed—I admit this is highly subjective—somehow relieved. Something in his eyes softened. His breathing slowed. Could that be what he had meant to tell me?

I said all this quietly, so Olga wouldn’t hear and think I’d lost my mind, but I’m pretty sure she heard me anyway. I still don’t know why I said it, but I would rather have said it than not—in case he heard, and understood.

Two days later I took him back to the house. Tanya, a young woman from the Caribbean who looked after Walker from four in the afternoon until eleven in the evening, was waiting when we walked in the door; Trish, his night worker, was waiting too. Tanya had been with Walker six months, a long time: he had stretches of running through workers, two weeks at a time before they gave up in despair from too much crying or too many head butts. Trish was even more unusual: she’d been hired to look after Walker at night when he first moved into the group home, three years earlier. She knew Walker as well as a mother knows her own child. Each night Tanya put him into his Power Rangers pyjamas, whereupon Trish took over. In the morning Tyna, the manager of the house, would come in and do twenty minutes of signing with him while he sat on the toilet before school. She’d been trying to teach him the sign for “Play” (an outstretched hand). It wasn’t going well, but she kept at it. At home I was trying to teach him modified signs for “Stop” (chopping motion of one hand on the other) and “Yes” (fist flicked up and down) and “No” (head shaking back and forth) and “Love” (hand over heart) and “Friend” (a touch to the chest). They seemed like words he might need to use. He wasn’t very good at this, but neither was I. I’d make the sign and he’d laugh uproariously, and then proceed to ignore me. It was like working for a boss who always seems to have something more important on his mind. The only way to keep Walker’s attention at all during the signing lessons was to
talk
while I flapped my arms and hands. He liked this for the same reason he gravitated to his workers more than he did to the other kids in the house: none of the residents spoke, and Walker was drawn to the sound of the human voice. He just couldn’t master his own.

Why couldn’t he learn sign? There are scientists who believe even severely delayed children like Walker set the pace of their own progress, that they have a sense of what they can and can’t manage, and adjust accordingly. Darcy Fehlings, a developmental pediatrician at the respected Bloorview Kids Rehab centre in Toronto, had known Walker as a baby. “I do believe that the children as much as possible make sense in their own way of the environment around them,” she told me one afternoon. “I think there are patterns that Walker would recognize, that give him comfort and structure.” But he could only absorb what he was ready to absorb—and if he was easily overstimulated, and wasn’t ready to make eye contact, then he wasn’t ready for sign language: it was me who had the problem, not him. On the other hand, Dr. Fehlings remembered Walker going down a slide, as a little boy, with total enthusiasm. “That, the slide, was an iteration that made sense to him,” she said.

Something else that clearly made sense to him was to stay awake as long as he could and be as physical as he could be while he still had an ounce of energy in him. He didn’t want to miss
anything
. Even at the new house, as he slowly became a teenager, a full night’s sleep was rare, and when he had one it made his handlers ecstatic, because then he was less temperamental. “On his happy days, he’ll jump on the bed,” Trish said to me one day, “and if you close the net”—the netting on his veil bed that kept him from falling out—“he’ll run into the net and fall down. He thinks that’s hilarious.” On weekends after he went swimming at the community centre she took him for walks. “They know him at Sobeys,” she said of the local grocery store. “They all say ‘Hi, Walker.’ And then we get coffee, and he tries to smash everything, and then we sit.” He loved to pull bags of pasta and cans of soup off the shelves.

He tended to bop the female workers in the house with his arm cans, but not the men. “Just the girls,” Tanya said, “because he gets a rise out of them. They say, ‘Walker, don’t smash my bum.’ And he goes, heh, heh, heh.” She looked at him. “Is that your mating dance?” she said, her soughing island accent softening the joke. Tone, inflection, implication: he got all that. He was a master of the unspoken.

After three years of nights with my son, Trish knows things about Walker that I don’t know. She brings back nuggets from her explorations, lays them out for me to see and admire.

Let’s say it’s the day I am to meet Trish and Walker at the Toronto Hospital for Sick Children at 6:30 a.m., the prescribed check-in time for a 9 o’clock operation to have his teeth cleaned, his ears irrigated, and a hearing test for good measure. Nothing serious—but because it is Walker’s ears and Walker’s teeth, the procedure requires a general anaesthetic. Without a general anaesthetic none of it is possible: Walker is not going to sit still to have someone jam a probe down his ear, or even a toothbrush into his mouth. (The only person who can get his teeth brushed is Olga, his nanny. To her he submits, only emitting a quiet, steady moan like a sump pump.) There are the usual delays at the hospital: the standard one-to two-hour wait, plus the usual interview with the anaesthetist, today a young Indian who seems barely into his twenties and who wants to know of any allergies and where Walker’s heart murmur is, exactly. I say, “It’ll be in his chart,” which is what I always say. But because the chart is six inches thick, no one ever seems to have read it. By now the young doctor is paging through: over his shoulder I can see letters from neurologists I have never read, but getting copies of them is like trying to lay my hands on classified government secrets. Walker sees many doctors many times a year: he is an ideal candidate for a universal online chart. The hospital has been talking about digitizing patient charts for years, and the government has spent nearly a billion dollars to that end. Diabetics will be the first group to have their records computerized, though concerns about confidentiality keep getting in the way, to say nothing of the cost. Still, if ever there was a child who had less need of confidentiality and more need of a universal medical record, it is Walker. I have such conversations many times in the course of a single visit to the hospital.

“How will you administer the anaesthetic?” I ask.

“Probably a mask. Or maybe an IV, but if he’s reactive, probably the mask. Is he congested?”

I would have thought it was a little late to be asking, but out-patient medicine is practised this way, on a strict tell-me-what-I-need-to-know-and-no-more basis.

“He’s often congested.” This is Trish speaking. “It’s allergies.”

“Pneumonia? Allergies to azithromycin?”

I’ve asked for the anaesthesia details to put the doctor at ease, to reassure him that Walker is as tough as other kids, that his father is fully engaged in his health and welfare. The doc is surprised—most parents don’t ask for details—but thrilled at the chance to talk about the heady tools of his trade: sevoflurane; fentanyl (a morphine-like sedative); propofol in the IV. “Maybe some rectal Tylenol when he comes out of it.” Rectal Tylenol? Is there no end to the indignities the boy has to suffer?
Not tonight, dear, my ass hurts
. The jokes bubble away in my mind. It is not always so grave, the hospital. “He’s fed by G-tube, right? Maybe we’ll just do it there, forget the rectal Tylenol.” We go back to waiting. To distract Walker, I sit in a wheelchair and lift him into my lap and tool around the ward and the floor. I try to wheel as fast as I can; it’s not as easy as it looks. For twenty minutes the boy’s in heaven, a new record for sustained mutual pleasure. He loves to cross the pedestrian bridge that spans the lobby and look out at the huge coloured mobiles of cows and pigs and moons hanging in the atrium. I’m surprised by his glee, and tell Trish.

“Oh, he loves to ride in the chair,” she says, matter-of-factly. By now she has taken off her jacket, and I have to work not to stare at her cleavage. Staring at a woman’s cleavage is not an act a man ever wants to be apprehended in the middle of, but it is especially not the sort of thing you want to be caught at while you are in pre-op at a children’s hospital with your intellectually disabled son while you zoom around with him in a wheelchair. But Trish ignores me, or forgives me.

“He used to ride all the time with Krista Lee, on her lap.”

Krista Lee, from his first group home, where most of the kids were medically immobile. Walker was King Rat in that place, its star boy: he could walk. Within weeks we noticed his confidence improving. Living with us, he was always the least capable one. There, he was a traveller, a cosmopolitan. Kenny, Walker’s first roommate, had suffered brain damage in a near-drowning, and could no longer move easily on his own. But Walker’s mobility made Kenny so excited he’d clap his hands and laugh. Kenny couldn’t form words or fully control his body, but he could hear and understand and make himself understood in a flurry of gestures and noises, especially when he had visitors. He was a sweet kid. I never felt so loved as in that place, surrounded by those fallen children.

Krista Lee was a pretty girl with wheels. But her mind was unreliable. Walker adored her anyway. “Sometimes he’d get up and use the automatic lever on her chair and set her going,” Trish said. “And Krista Lee’d be all ‘Walker! What are you doing!’ He loved that.” I have no doubt. When he grew too big for the house, and moved on to the second place, a few miles away, the workers kept the news from Krista Lee until the last minute.

All these strangers were now a part of Walker’s life, to which each of them brought their own story. Trish lived with her husband and daughter to the northeast of the city in a suburb called Ajax, a town that had sprung up like moss in the shadow of a munitions plant during the Second World War. Now it was a vast rolling suburban plain of bungalows and split-levels and malls and churches that advertised their sermons on sign boards by the road (Forbidden Fruit Creates Many Jams). It was a place where you saw married women with cigarettes in the corner of their mouths hauling out the recycling and boys in helmets with hockey sticks riding home on skateboards, where the intersections were as wide as baseball diamonds.