The Boy in the Moon: A Father's Search for His Disabled Son (6 page)

We fantasized about holidays, Johanna and I, but getting away was complicated. He was three years old before we left him and Hayley with Olga overnight. But we didn’t like to do that: Olga worked hard enough as it was; it was too much to ask for more. Instead, we took him with us: me, Johanna, Hayley, Walker, and often Olga—our little caravan of care. One early CFC study speculated that the protective myelin coating on the nerves of children with CFC was insufficient, which resulted in too much information coursing through their brains: their lack of output was the result of too much input, an insufficiently controlled and organized neural network. It made sense to me. In a car or in a plane, looking out the window, stimulated, Walker never stopped moving. It was all he could do to be contained by gravity. On a plane he looked out the window and laughed, looked at his hands, looked out the window again, laughed again, picked up his knees, balled into the seat, rolled on his side, hauled himself up again, looked out the window again, whacked himself in the head, fell flat on his side, laughing uproariously, and then stretched himself out on the smooth, slippery chair (he loved the frictionless slidey-ness of the upholstery). Then he did all of it all over again, and then he started crying. That was two minutes’ worth of action. He didn’t seem to be able to control whatever came over him, and a lot did.

He loved an airplane takeoff and our car pulling out of a parking spot. He liked to lower the electric windows in the back seat and throw things out of the car when he thought no one was looking. (Which was frequently.) Sometimes when I worked at home on the dining room table, plowing my way through incomprehensible papers on genetics or neurology, he walked into the room, sat on my lap, accepted a jiggle or two, and then, ten seconds later, got up and walked away. I could hear Olga in the kitchen, and I thought,
how long will this last
?, even as I was grateful for the interruption. Ten minutes later he was back, to do it all again. Strange rhythm of the mystery boy.

Those were the good days. On the bad ones he stayed with me, hanging on to my arm or lying near me, moaning or wailing or crying. When it snowed too much for him to go outside in his stroller he pitched fits, lying on the floor and slamming his head against it. I know the precise shape of that noise from memory.

On the good days my wife and I snatched the time we could get to ourselves. Our friends Cathrin and John had an old lakeside cottage north of Toronto, in a region known as Muskoka, an hour and a half by car. They invited us north again and again, often with another couple, Tecca and Al. It became a second world for us, a sanctuary of weekends. You could see for miles across the water from their island into the endless feathery green of the trees.

We took Hayley and Walker and Olga, and Olga watched our boy, sat with him in the screened-in porch of a little sub-cabin by the shores of the lake: the tune and words to “Do Your Ears Hang Low?” floated from that veranda across the water again and again and again like puffs of love. There was often a breeze to thrill him. Late in the afternoons he might paddle in the water, never too enthusiastically, but he loved the company at waterside. He loved to glide out in my lap in a kayak, dragging his hands over the side like an insect feeling the watery surface of its world. I rambled at him, talking in his ear. “See the trees, the way the greens are different? Or see the waterslide? You’d really like that,” He loved being spoken to. He loved a lot of things, or seemed to. I nattered on in his ear, endlessly, but I didn’t mind that he never answered. He made me stretch for him; for inexplicable reasons I am grateful to him for that, always will be. Where would I have gone, without him? He was such a little boy, featherweight, dependent: whoever was with him was his world, and I loved being his world, if he let me. His curly hair against the underside of my chin as we floated together in the boat.

In the evenings, after dinner, sitting out on the screened-in porch, Walker joined us again. I remember the first time he did it, how deliberately he visited everyone: climbing up into Cathrin’s lap, laying his head against her shoulder, then climbing down and moving on to fondle Tecca’s silver bracelet (it was she who dubbed him “the jeweller”), moving on from there to Al, to John, to me, to his mum, his sister, her friends, his world. He made his rounds. Then he glided back to Olga, or wandered past the lights and sounds of the stereo, or opened the screen door to the evening outside. I imagine—that’s the only word I can use—he wanted us to know that he loved us. His grown-up friends look back on those days now as a unique, impossible trip we all took together. “Those summers were an extraordinary time,” one said to me the other day, “though I’m not sure I knew just how extraordinary at the time.”

The rest of the time I read and talked and swam and cooked. And drank: I often drank gin heartily when it wasn’t my night with him, for the instant lift-off. (I had no time to lose.) Every free minute felt like a sapphire, and yet also stung me with a rebuke: not because I was being irresponsible, but because his need never went away. We frantically tried to relax as much as we could in the time we had. It was only thirty years ago that a child like Walker might not have survived, and his affliction was still a mystery, to the medical profession as much as to us: how could I not wonder what I was supposed to be doing with him? Johanna and I traded nights at the cottage too, one of us sleeping with Walker in a tiny bedroom on the ground floor of the main residence, while the other enjoyed a night alone in the luxury of a sleeping cabin by the water—free to stay up late, have another drink, live briefly what felt like the exotic life. Trains hooted by in the night on the far shore.

In the morning after a bad night with Walker—I had a raging theory that he never slept well with me because he slept like a log every other night with his mother—after he had finally fallen asleep, or at ten in the morning after Olga had come up from her cabin to take over, I stumbled down the path to the lake. I can still see my long-legged wife in those days: already stretched out by the water, greedily tanning and reading. I was happy for her, and angry at her, and exhausted, but the same pang shot through me anyway: where was the boy? (We called him “the boy.”) Why wasn’t she with him? Why wasn’t I? The admonishments were on a circuit, and they ran incessantly beneath our surfaces.

*
That same morning
The New York Times
featured a front-page story, “For Families of the Ailing, the Chance to Relax.” The story was about couples seeking temporary respite from caring for their sick and aging parents. Nearly 10 million North Americans take care of someone with Alzheimer’s or another form of dementia. The consequences of caring for someone who is handicapped, the story claimed, were serious: depression, hypertension, diabetes, sleep disorders, heart disease and “death.” For anywhere from $120 to $200 a day, grown children (most were in their fifties) could leave their ailing parents in the care of a respite facility. The offspring quoted in the story spoke of these breaks as if they were miracles, though they all admitted to feeling guilty for needing the service. “What kind of daughter am I, leaving her for four days?” one of the women interviewed remarked. “I felt I was being selfish. Why do I need this time away from her?” Oh, I knew that feeling.

five

It was nearly impossible to take a good photograph of Walker. The trick was to wait for a crucial intersection when at least three things happened at once: a moment when he was calm and his body felt organized and relaxed; a moment when his internal battles abated and he wasn’t hitting himself; and a moment when he was alert and energized. Such moments didn’t occur often. When one did, and you happened to have a camera on hand, and you managed to get a picture before the moment evaporated, then, maybe, you got a picture you wanted to look at, that you didn’t have to look away from. They were our real treasures, proof of the Walker we were convinced was there, under his fuss and pain.

The first time it happened he was nearly three and he was sitting in the bath. By that point in his life, his calm in the bathwater was almost biblical. Eight gallons and three quarts was the ancient Hebrew measure of a bath: that was about right for Walker, until the warmth hit his chest, whereupon he got nervous again. The trick was to stay within his narrow zone of comfort.

That first good photograph was a fluke, taken as he looked up from endlessly turning a toy in his hands. I had bought sinking submarines and squirting whales and swimming frogs, but he liked the measuring cups and sieves that let the water trickle out. He liked the noise they made.

The first shots Johanna liked, unequivocally, were taken when he was seven. Seven years of trying to catch Walker in a pose she wanted to look at.

It was a hot day in the summer, and Walker, per usual on hot days, was wearing little more than a shirt and a diaper. He was lounging on his back on the couch in the TV room, in an orange T-shirt, wearing a pair of my sunglasses, which Hayley had slipped onto his head. This in itself was daring: Walker was hell on glasses and sunglasses alike, and took no time at all to break their arms and shatter their lenses. Johanna had recently interviewed Robert Evans, the late film producer. By then Evans was in his seventies, but he still personified the sixties Hollywood mogul—tinted shades, cravats, starlets on his arm, a voice that seemed to have been strained through smoke and money. Nothing fazed Evans, nothing embarrassed him. As soon as she saw the shots of Walker, Johanna started calling him Walker Evans, and pinned them to the kitchen cupboard, a reminder of his charm. It was his Nothing Fazes the Boogle look. I imagined he was reminiscing about Natalie Wood. When I look at it now I remember the chant he had in those days (he doesn’t do it any more), a
rah-rah-rah-rah-rah-rah
routine that was clearly his way of telling a story, when he knew he had the floor. He could have been on the telephone, luring someone into an obvious deal. There was to be no interrupting him on this one. He had no words, but he had tone down.

It was a miraculous shoot, in any event, that steamy day in the TV room: the very next shot in the series conjured up not Evans, but the comedian Drew Carey, who has since assumed Bob Barker’s role as the host of
The Price Is Right
. Evans and Carey—two men who, apparently, were more than willing to play a role, even degrade themselves, to be in showbiz.

In the Carey shot he looks more wary, confident but watchful, taking in some inanity across the sound set. A normal photograph made it possible to imagine he was normal too.

My favourite photographs were of his more private moments. When he was barely a year old, we rented a cottage on an island in Georgian Bay, a few hours north of Toronto. It was an isolated place forty minutes by boat from the nearest marina, surrounded only by other cottagers on other islands, accessible only by water. It was so quiet when the wind was low I was afraid the other cottagers could hear Walker’s crying, or even my shouting. But the quiet changed him; up there he transformed, became surer of himself, less distracted. Sometimes he looked out toward the orange sunsets at the end of a fine day, with the breeze blowing, as if he could see something a thousand miles away across the water of the bay—the long view. He knew the place, knew its feel, anyway, even if he didn’t know where he was precisely, or couldn’t show it. We have a photograph of him there, in Olga’s arms, the only time she ever came up in seven summers (it was the one place she wouldn’t go: she hated snakes, and the island had rattlers), his weird tuft of hair golden in the sunset light: the God child, Johanna called the picture, and he looked it. It was the first place I ever imagined him to have an inner life, a life private from the rest of us. And it was there, one afternoon, as everyone napped after a day swimming—the Canadian version of paradise—that Johanna snapped a shot of him on the soft blue couch in the living room, the afternoon sun glowing through the wraparound windows:

He looks utterly normal, the spitting image of his father as a kid, and of his grandfather before him. Perhaps that’s why I liked it: it was proof of our bond. I see his slim thighs, his tan—a tan! He has laid his head on his hands, and his knees are up; he’s wearing a pair of checked shorts (Hayley’s castoffs), and a blue sweatshirt. It’s as close as we got to a picture of what might have been. It even feels slightly dishonest.

In my favourite photograph of them all, he is six. He’d started at a new school by then, and had blossomed. Beverley Junior Public School was ten minutes by car from where we lived, and right next to a tiny office I had in those days: I could stand outside and look over the fence at him, swinging in the playground. It was a gorgeous school, huge and open, designed with skylights and low windows for the children who spent most of their day on their backs. There was space.

The snapshot was taken just after he started. Walker is standing in the sunroom of our house, gazing intently at my old manual typewriter. He has his hands and fingers splayed across the keys. It was the feel of the keys on his itchy palms that drew him, of course, the give of the keys, the sensation of manipulation. But he looks as if he’s making progress, an illusion not uncommon to people who make their living as writers. He’s dressed in the red plaid shirt I gave him, and he’s ready to type, with plenty to say and the glint of someone eager to say it. Maybe he had seen his parents hunched that way so often. It’s a charming scene; who knows, maybe what it depicts is genuine curiosity, a moment of clarity in that fogged-in head. Or so I think—until the charm falls away, and the space around my eyes begins to ache, and I can’t look at the picture any longer. Every instant of joy with him is like this, lined at some eventual depth with the lead of sadness, a reminder of—well, never mind that. No need to go too big too fast. But I have to put the pictures of him aside now; that’s as long as I can stand it. It took me ages to let these fantasies go; I daren’t let them back.

During bad stretches, my wife and I made two or three trips to the hospital a week. Infections of the ears, gasping colds, epic constipations, rashes, bleeding, dehydration
and
constipation (on at least one memorable occasion), toothaches, and—most of all—unstoppable crying. One evening I was at the Hospital for Sick Children at 11:30 a.m., stayed until midnight, and was back again the next morning from 9 to 12.

Reality goes 3-D in the inferno of the emergency ward at a children’s hospital. The default noise level, for starters, is usually half a dozen children crying at once, each in a different key and scale. Rossini would have made an opera from it. The staff bounce from one crisis to another, human balls in pastel blue and green fatigues, utterly dedicated to the welfare of the children: overeager residents, overworked nurses as calm as reeds, the doctors hovering above it all, trying not to fall too deeply into the actual screaming pissing puking aching fray. And of course the equally raucous sound, one you can’t always hear but can always feel as a roaring in your ears—the anxieties of the parents. Some of them are so graceless as to talk back to the doctors and nurses and worry and push their kids ahead of yours because their need is greater or they have been waiting longer. There are two categories of mothers in Emergency, the ones who hate being there and the others who secretly love it, because here they are finally among other people who recognize the pre-eminence of their child. Emerg was the full sociological pageant: otherwise healthy-looking kids with strange bruised welts on their unsuspecting legs (blood disease); single mothers with four pallid, ill-nourished children from homes I could see in my mind, with too many extension cords in the bedroom (the youngest has been running a temperature of 102 for four days straight); huddled, well-dressed families unfamiliar with the drama of post-operative consultation (camping accident, knife in the head, narrowly missing the optical nerve, no damage to the sight or mind but some permanent impairment of movement in the left arm).