by Ian Brown
Sometimes I was too tired to say hello to her in the morning, and I was often bad-tempered—she was like someone from the office that you see on the street, a nod, hello, a smile, and then you are apart again. (“Good morning,” she would say, as I stumbled into the kitchen. I would grunt in response. “Good morning,” she would say again.) I admired her, but it was hard to pony up the value-added considerations, slip in that occasional unanticipated favour or kindness that holds together any marriage that lasts. I saw her, us, more and more at a remove, from a distance: there are worse arrangements, but this one never seemed to change.
The negotiations over Walker were, and still are, endless. “Can you take Walker to his genetics/dental/nurtrition/ physio/you-name-it appointment on Wednesday?” my wife will ask. She is organized, and direct. I prefer a more “neutral” approach: “Walker has a genetics/dental/nutrition/physio/ you-name-it appointment tomorrow,” I say, leaving my request unstated.
We argue about who will take him, who took him last time, who has more or less work, who has a deadline, who is contributing the most. Money talk is radioactive. It seems impossible that Johanna could contribute any more than she does, but I am not sure where to find the extra in myself to help more. We have our private moments, our intimacies, but they are so rare and so urgent they’re like hallucinations. Nobody can say we aren’t efficient.
In theory, having a handicapped child could bring a family closer together—a mutual project, a joint challenge, a bond. In practice, Walker deprives us of any privacy we ever had—and we are private people, introverts, readers and ponderers. Instead of bringing us together, Walker scatters us, making us both less private and intensely more so at once, desperate for a refuge where there are no interruptions, no surprises. I often worry I will never read an entire book again; my concentration seems permanently shattered. I long ago abandoned any plans I had of owning a cottage or a vacation house. It’s all we can do to make it to the medical appointments.
Weeks go by without any real contact between us—and then we fight, perhaps to force some connection. The evidence of Walker’s demanding presence never changes, the household stigmata of a disabled kid: the mangled window blinds, in whose jalousies he plays his fingers for minutes on end; the endless piles of laundry that self-propagate like jungle plants; his toothbrush in the kitchen drawer; the avalanche of potions and lotions and syringes and bottles held back by a cupboard door; all of it. With this chaos besetting us at every turn, would it be too much for him (for her) to put the fucking milk away?
Maybe it was us, not him: I often thought so. There were other families—I knew they existed because I read about them on websites—who seemed to cope well. We had been brilliant once, before the boy. I missed those days.
But: I still love my wife. I still admire her body, her brown skin; I still want to protect her. She still makes me laugh, tells a story brilliantly, remembers the lyrics to any song she has ever heard, can relate movies scene by scene, is capable of deep and lasting kindness. She is still a talented mother to Hayley. I can still make her laugh the way no one else can, can still reach the eccentric, private corners only a wife and a husband know. We lie in bed when we can, punning madly: I can hear her mind whirring to one-up me. I begrudge her time with the newspaper, but not her love of others; I forgive the dark fear she has felt on so many occasions, her struggle to love her broken boy. I was always willing to step in to help her through that black self-hatred. In that way the boy sometimes made us generous, too. You have no idea how much pleasure a person can offer to another with the words That’s okay, I’ll take him to the doctor.
An example: one night we attend a party. It’s Christmas time and it’s an office party in some dark bar in some darker corner of the city. Walker is still small, no more than three years old. I am sitting against the wall on one side of the room, half listening to a couple I know talk about religious fundamentalism, of all things. But what I am really doing is watching my wife—the secret hobby of so many husbands. I remember this moment because I am watching my wife briefly emerge from the cocoon of her endless obligations, from her endless life at home with a disabled child. She’s famous among our friends for the good spirit she displays in the face of this hardship, but I know what it costs her. She is huddled at the bar beside a man I know, an old friend of ours, and she is laughing out loud, the last instance of which I can’t remember, at least in my company. They look intimate: their shoulders are touching, their drink is the same, vodka with tonic. I know he is very fond of her, so much so that I once asked him—I admit I had had a drink—if he was in love with my wife.
“Yes,” he said, “I am.”
“In a way that’s a problem?” I said.
“No,” he said. “It’s not a problem.”
“All right, then,” I said. “Crush away.”
And this is the thing: I really don’t mind. There is space in her privacy for my own tattered privacy, for starters. And how can I begrudge her that moment of friendship and freedom and even flirting, that tender intimacy, after all she has been through; how can I begrudge her some elemental attention, the frankly adoring gaze of someone fresh and new, someone with whom she doesn’t have to negotiate every moment of respite? She never stops smiling in his tall company, and I am surprised to find myself pleased to see it. I am sure she has her secrets, and I am willing to let them stay secret, to let them remain hers and hers alone. I once came across a blog on the Internet written by the father of a disabled child, and he discussed such matters. “A disabled child teaches you to make your own rules,” he wrote. I nurse a drink, and wonder what she does when I am not around. I know she wonders the same about me.
Mostly we forgive each other. Walker taught us how to do that.
January 25, 2005
My first visit to Stewart Homes, an independent, for-profit assisted-living organization that may—may, with the intervention of the special-needs group—have a space for Walker to live.
It was founded 30 years ago by Alan Stewart, who was himself a foster parent.
I was terrified at the door. I know what it’s like to enter a room of handicapped kids: I was always astonished by the symphony of whoops and yowls that rolled over me when I visited Walker at school. But this is different: This is their territory, and the one who has to measure up is me. I stumbled into five children in a single room, but so isolated from one another, so deeply private, they might as well have been in separate galaxies. Gaspingly sad.
There are about eight children in each house—bungalow-style; spacious enough for the pumps and wheelchairs, lifters and toys; the floors seamless, carpet-free, for wheelchairs. The children are foreshortened or twisted, but self-possessed: This is their place, a haven where they are no longer oddities. The school is 20 minutes away by bus; the local doctor does house calls; there’s a good hospital, a nurse on staff, a psychiatrist on call. One of the things Johanna doesn’t like is the place’s smell, a vague musk with top notes of humanity and the bathroom.
There’s no room, of course. “Sometimes openings do come up in unpredictable ways,” Diane Doucette, the director, tells us.
I think she means that children die. I am happy to wait.
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.
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.
“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.
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.
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 c
an 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.