The Boy In The Moon Part 3

Without an advocate, waiting for something to happen that will help us out of the nightmare of caring for a boy whose needs are growing as our capabilities shrink, we're thrown back on the ad hoc services the government provides as a stop-gap to a more permanent solution. There are respite care services-caregivers who will come and stay with Walker for half a day twice a week-but they too need to be sought out, applied for and approved. Everything we need requires a form: which form? Where do we get it?

Who has time to get it? Where do we send it? Once it is sent, we wait.

A number of brilliant university students pa.s.s through Walker's life in this way-women my stuffed brain remembers only as Gwen and Elizabeth and Del. Gwen is a medievalist from Texas, a brilliant and creative woman with a s.e.xy-librarian look and a hulking, pleasant boyfriend. Elizabeth is the first Buffy the Vampire Slayer Buffy the Vampire Slayer fanatic I ever met: she could talk wittily and endlessly about her heroine, and taught me to take such pop culture obsessions seriously. Del is the sweetest: a quiet, dark-haired, dedicated university student of childhood education, sister to a disabled boy herself. Hayley adores them all like big sisters, and Walker no more fazes them than a busy street does. They are so young and hopeful and energetic, and I am so grateful for them. Grat.i.tude springs out of me like crabgra.s.s out of a lawn, riots of it. fanatic I ever met: she could talk wittily and endlessly about her heroine, and taught me to take such pop culture obsessions seriously. Del is the sweetest: a quiet, dark-haired, dedicated university student of childhood education, sister to a disabled boy herself. Hayley adores them all like big sisters, and Walker no more fazes them than a busy street does. They are so young and hopeful and energetic, and I am so grateful for them. Grat.i.tude springs out of me like crabgra.s.s out of a lawn, riots of it.

But they all have their own lives, and they never stay long. There are some tax deductions available, but both Johanna and I work, so our income is generally too high for us to be eligible, we discover after we fill out the schedules. There are programs to cover the costs of a.s.sistive devices, but they require mountains of paperwork, not to mention background checks: the government seems to think I might have reason to scam a netted bed and an IV stand. Just what I always wanted! In any event one of us ought to fill out these forms-but both of us are working and looking after Walker full-time. When we both begin to freelance, to give ourselves more flexible hours, the forms do get filled out-Johanna spends four hours a week on paperwork-but we make less money, whereupon we can apply for those tax deductions. The entire system resembles a Rube Goldberg contraption.

And that's only the bureaucracy dedicated to the disabled. The non-disabled bureaucracy is another galaxy altogether. At the age of five, Walker begins to attend Beverley Junior Public School-a famous local inst.i.tution dedicated entirely to intellectually disabled children, where the ratio of students to teachers is a mere three-to-one. The school is a bright, airy s.p.a.ce designed for children who can't see out of normal windows or walk easily through a standard door. Its effect on Walker's confidence is instantaneous: within a month he progresses from needing to be carried from room to room at school to walking on his own. But within a year, the provincial government announces its intention to close the school. The school is only for the disabled-a "segregated" facility, in the parlance of disability education-and doesn't conform to the province's policy of supporting (much cheaper) "inclusive" schools, where, theoretically, the disabled learn alongside the abled, and each gets used to the other. Inclusive schools are often excellent, and much preferred by a certain generation and political ilk of educators. But even those educators will admit integration isn't for everyone, that dedicated facilities can be more helpful for children as delayed as Walker.

But the provincial government is against Beverley School for bigger reasons, as well: the school doesn't conform to the Ministry of Education's arcane square-footage rules. To justify cutbacks to the province's education budget, the minister of education has ruled that schools have to support a certain number of students per square foot of floor s.p.a.ce. This allows the Conservative government to build newer, more "efficient" schools in the suburbs, where their political support is, and shut down schools in the downtown cores of larger cities, where the irritating liberals tend to live. Beverley doesn't conform to the square-footage rule because its handicapped students need more s.p.a.ce, for their wheelchairs and foam mats and ventilators and light rooms and IV stands and wagons, and so the inst.i.tution is slated for closure. Public outrage eventually forces the government to keep the school open, but the government's priorities are clear: the disabled don't vote, and so don't deserve much individual attention. They don't fit the formula-any formula.

We cobble together what Walker needs regardless. Among Olga, ourselves, respite care, the university students, ad hoc programs, the odd agency, school and luck, we manage to survive ten years. The routines become more familiar, but the stress seldom abates. We can't save any money, we can't make any real plans, we can't travel farther than a car or a stroller can take us (now that Walker is bigger, planes are dangerously harder to manage), or anywhere there isn't a good hospital nearby. We try to live as if everything is normal. But the routine is as crippling as the position I have to sleep in with Walker. And the future looks dreary and spare. The money we spend on Olga, the $12,000 a year we spend on formula alone, the money we spend on diapers-all of it could be paying for Hayley's university education. She gamely says she'll try to win a scholars.h.i.+p instead, but she is already an anxious child, the fallout of living in a house where something is always about to burst. I dream incessantly about money, about having misplaced my belongings, about being chased and gunned down.

And then, suddenly, there is a glimpse of sky in the overcast future. In the fall of 2003, we're invited, once again, for Thanksgiving weekend to the cottage of our good friends John and Cathrin. Our steady companions, Allan Kling and Tecca Crosby, as well as another couple, Laurie Huggins and Colin MacKenzie, old pals, are guests as well. We don't get to talk to them much, however, because Walker is in a terrible state. He never stops crying, never stops. .h.i.tting himself, never stops requiring the attention of not one but two (and sometimes four of five) people, for three solid Canadian autumn days.

Two weeks later, after intense lobbying from Tecca and Cathrin, Laurie calls me-me, not Johanna. Laurie knows where she'll find the colder, more receptive heart. "I have someone I want you to meet. A woman who's an advocate out of Surrey Place," she says, referring to a local inst.i.tute that specializes in the study and treatment of autism. "I think she may be able to help. Because you need it." To Laurie's fresh eyes, our lives-Walker's and ours-are a nightmare.

An advocate, again. The woman will come to the house, suss Walker out, see what we're like, investigate our lives. If our "needs"-the word wears permanent quotation marks in my mind-are great enough, she will try to help us find the corner of the special-needs world where Walker will be able to stand and live and be. But I don't hold out much hope.

April 4, 2004 We now have an advocate for Walker's cause. Her name's Margie Niedzwiecki. "We'll begin to make initial applications for long-term care," she said the first time we met, just before Christmas of last year. I must have looked shocked. "You don't have to make that decision now," she quickly added. "Think about it." last year. I must have looked shocked. "You don't have to make that decision now," she quickly added. "Think about it."

Any such application will take years, in any event. To my surprise, the mere fact that Walker is both mobile and dependent makes him a complex case. There are homes for medically fragile kids, but Walker might zoom around turning off their respirators, just for the fun of pus.h.i.+ng the b.u.t.tons. Then there are places for intellectually compromised kids, but they can't handle Walker's fragility, his small-boyness.

The shortage of places of either kind is epidemic. Every month in Toronto alone, 2,400 disabled people are looking for a place to live among seventy-six group homes. Some wait eight years. Those number seldom change.

Our best bet, Margie says, is to get help from a new branch of an established social service provider that specializes in "children who are unusual and hard to serve."

I'm sickened by the idea of Walker living anywhere else, but my guilt is by now a luxury. We must act. He can't be alone for even a minute, twenty-four hours a day. Eventually he'll have to move. Margie says it's a good idea to begin the transition early. At eighteen, it will be too hard.

The first visit takes place in our living room. Margie's older than us, maybe early sixties, and tall, with shoulder-length grey hair. She is extremely calm, and listens about ten times more than she talks. She doesn't use social services jargon, which immediately puts her in my good books. Even Johanna agrees to sit and talk to her about long-term care-a surprise.

"Walker responds to love," Johanna tells Margie. "We want him to go somewhere where they love all of him, not just some of him."

But she doesn't mean it. Like me, she doesn't want him to go anywhere at all.

My father and Walker have something, some indefinable thing, between them. The old man's in his nineties. He still goes to work, still performs fifteen minutes of calisthenics every morning, but he feels his weakness, and he hates it. He gave up his car at the age of ninety-three, after hurting his neck, and still thinks he's going to drive again. It won't happen, but the car is his great equalizer: he can no longer walk as fast as some people, but in a car he's the man he was. His name is Peter; his second name, Henry, I gave to Walker.

I drive out on weekends to help my parents. They live alone in a small house by a river, the last remnant of country land on the fringe of an omnivorous suburb. He needs me and my car for errands. The barber, the liquor store, various recycling drop-offs, the grocery store, the hospital for weekly visits to have my father's varicose veins wrapped, keeping my mother happy-these are his pleasures now. He's desperate to stay mobile, hence the three-act exits from the car: door open, legs swung to the side-"Can you manage?" "Yes, yes yes."-the arms spread to the sides of the door frame, as if he were about to parachute to the distant ground from the bay of a Cessna. The rock back, the catapult up and ... out! Steady! Counterweight to prevent the pitch forward! Has he ... yes! Hurrah. The human slingshot, enacted merely to fetch milk or pay the bills at the bank-one of two banks he and my ninety-four-year-old mother use, so as not to risk keeping all their money in one place.

My father's skin is as vulnerable as onion paper in a bible. I used to clap my arm around his shoulders when we met; he flinches if I forget and try it now. I could dislocate something. Dislocation is to be avoided at all costs, in all its forms. Routines cannot vary-the bank, the empties, then the grocery store, in that order-and neither can the route. "Why are you going this way?" he asks in the car, as if I had questioned the existence of carbon molecules themselves. He arrives forty-five minutes early for scheduled appointments. He carries a handkerchief to wipe spittle from the left side of his mouth when he thinks I'm not looking. Old age isn't just something he dislikes: he's personally offended by it. His mood is altered, slightly peevish. As his strength has failed, so has his famous reserve: he's crabbier now, except with Walker. They seem to understand each other's frailty; they have patience for each other.

Each time they meet, the same thing happens. The boy stands in front of the old man, and my father holds his hands and looks into his eyes. "h.e.l.lo," he says. They are both smiling. My father knows what to do without ever having been told. "h.e.l.lo there, Snodgra.s.s." As he used to say to me, and to my brother. Then Walker climbs into his lap and doesn't move for twenty minutes. Walker recognizes him, I don't know how because he doesn't see his grandfather often. It isn't that my parents don't like him; they simply can't take the worry. They send him cards on his birthday and ask us to buy appropriate presents at Christmas, and they ask after him every time I visit, but the chaos of Walker coming to their house and aiming straight for a vase of calceolaria on my mother's antique game table-no, that is not relaxing. His nose alone can drive my germ-warrior mother to distraction.

She loves him, there is no doubt of that. She-her name is Cissy-loves him like a thing in nature, like her clematis plant or her roses or the river at the foot of her garden, as if he ran in her veins as a thick, normal residue. It's the farm girl in her, the labourer who takes nature as it comes. But the farm girl-stout, strong, brave, even fierce-is also intimidated by his scientific needs, by his tubes and doses. She is afraid she will hurt him more. The day I told her just how disabled Walker would be-this was after our trip to the children's hospital in Philadelphia, after we learned his reading and many other abilities would never progress much beyond those of a two-or three-year-old-she was sitting on the small love seat in the television room of her impeccable house. She looked at me, her hands in her lap, expressionless, then she s.h.i.+fted to the edge of the seat.

"Well, we'll just have to love him as he is, then."

Not a gift she extended my way, when I was growing up: perhaps Walker has made her more tolerant. (If so, he's a miracle worker.) It's not much of an answer: We'll just have to love him as he is We'll just have to love him as he is. But it is the only answer that is always there, waiting. My mother has a talent for striking the flinty bottom of the truth.

My father, on the other hand, is his grandson's friend. They sit hand in hand. If Walker whimpers, he will hear a brisk and nautical "Come on, now!"-my father's years as a lieutenantcommander in the Royal Navy called back to service. It often works. The grandfather and the grandson are content to wait with each other. Maybe they are waiting for the same thing-but what is it? That is the sort of thought you have when you see them. This man who became me who became Walker. That stumbling, that hesitation, that indecision-the old man's, the boy's, and mine.

My father is not an emotional man: he was sent to boarding school in 1918 at the age of four. His favourite brother, Harold, died on a s.h.i.+p in battle; another brother left home, was never heard from again; neither is ever discussed. But Walker softens him. The older my father gets the truer this is. He sees the broken boy, and begins to understand that power isn't all he thought it was cracked up to be.

And now I am preparing to put his grandson in a home.

Mid-April 2004 Another meeting at Surrey Place, a Toronto inst.i.tution that specializes in autism, where a behaviour therapist has been working with Walker.

These meetings are always the same: playroom, indoor-outdoor carpet, pastel walls, half a dozen smart women with clipboards, all between thirty and fifty, all dressed in denim s.h.i.+fts or loose-fit stone-washed jeans with elasticized waists-good for working on the floor with children who drool.

Today's meeting is about Walker's head-bas.h.i.+ng. There's always new lingo to be harvested.

"So it's intrinsic?"

"He is intrinsically motivated. He's obviously getting something out of it."

"His motor skills aren't fine enough for sign language."

"Pointing may be better for low performers."

For Walker to communicate by pointing, he needs ten sessions of "pointing instruction." It's a new "implementation," requiring new "intake" and therefore new forms.

One of the therapists tells me she spends half her time negotiating the bureaucracy of the rehabilitation world. But without these women to light the tunnels, I'd have succ.u.mbed years ago.

The behaviour therapist isn't encouraging. "The way to stop a kid like this from hitting himself," she says, "is with food and toys. But Walker just doesn't care about that stuff."

Back at home, Johanna is shaken. "That's when I thought, boy, they don't know anything. I see now: No one's been helping us, because no one can."

April 28, 2004 Six months in. Our advocate, Margie, introduces us to Lisa Benrubi and Minda Latowsky, the guts of Walker's new special-needs team. Margie has been working on Walker's case for six months. Lisa's the boss.

The three of them came by the house and sat in our living room, and listened to the story of Walker, so far. We know how to tell it. Unlike doctors, Lisa and Minda and Margie actually make eye contact. They seem to hear us, too. "How have you done this for ten years?" Minda asks-quite genuinely, it seems. Johanna cries, pretty much start to finish. I choke up myself, have to blow my nose. Afterwards, I apologise to Margie. "No," she says, "it's good you cried."

Minda will be our caseworker. Until this program came along in Ontario, a developmentally delayed child had to become a ward of the state-legally relinquished by parents to the Children's Aid Society-to qualify for a group home. Under the new program, we will still be Walker's parents-a relief and a requirement for us. That it might ever have been otherwise shakes me, makes me see the dark magnitude of what we're doing. We'll make all the decisions, but his care will be spread around. Minda, my new G.o.d, refuses to refer to any potential group home as "Walker's house." She says, "It'll be your house too."

The real problem is structural. Until recently, no one-certainly no part of the government-funding apparatus-was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until twenty years ago, children this medically complex didn't exist. They didn't survive. Hightech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level this medically complex didn't exist. They didn't survive. Hightech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.

And Walker is an especially needy example of the new human strain. There are high-quality residential homes but they typically have only 10 to 12 beds. At $250 a day-24-hour care, shelter, food, transportation-funding is limited and based on need. The contraptions alone are bank-breakers: Tumble Forms Feeder Seat, $729; BreezeLite helmet, $129; veil bed (for safety), $10,000. It took us nearly three years to find the money for the one we have at home for Walker, and we only managed it in the end with Margie's help. Meanwhile, I can qualify for a $500,000 mortgage in twenty minutes. "What I'd really like," Johanna said after they left, "is for them to give us the money, so we could have all the 24-hour care he needs, but at home."

I don't agree. I'm not sure a miniature hospital in our house would be an improvement.

But Johanna claims she has had a Walker revelation. "Sometimes it's not a choice between right and wrong," she says. "Sometimes it's a choice between bad and slightly less bad. That was a revelation to me-that some things are unfixable."

She may be coming around.

What was happening to our marriage? Many days it felt like a man with a lingering sickness he didn't know he had, getting weaker and thinner, but turning up for work every day nonetheless.

"We ask so much of each other, taking care of Walker," Johanna said one morning, explaining our mutual bad mood to me, "that when it comes to looking after each other, there just isn't anything left."

Estimates of the number of marriages that fail due to caring for a disabled child range from 60 to 80 percent. The ones that do make it through, according to other studies, are that much stronger for the challenge. I have no idea whether any of the research means anything. In our case the grit of resentment lay like a fine dust over everything. But the prospect of leaving each other was unthinkable: there was no way we could care for Walker if we didn't do it together.

With our nights divided, we were roommates as much as husband and wife. I saw Johanna in the house in the morning, carrying diapers and feedbags and heading out the door to appointments, her arms full of the sleepy boy, and at night again as she jogged him on her knee or held him away from Hayley's homework or spritzed formula into his G-tube, or (in the delicious moments when he was asleep) stretched across the pine table in the kitchen, her cup of tea at her side, stealing time with the newspaper (which of course I resented because I had not had time with the paper; just as she resented it when our roles were reversed). Her tea: I thought about that a lot when we were too trampled to talk, the way she reheated the cup over the course of a day, kept it by her side always, like a salve or tonic that kept her going. I became a student of her dressing gowns: the long kimono I bought her at a craft fair, the turquoise j.a.panese sweeper, the tiny silky one in the summer, the black all-purpose cotton she wore when winter chilled the house. My wife wife, that ancient word; the mother of my children, the mother of Walker. (There was the sourness again. She wanted a second child She wanted a second child. I realize I was there at that moment of conception, but that didn't stop me from blaming the body that produced his body.) Johanna saw me from the same distracted, victimized distance: she worked at home, whereas I did not. I had a chance to slip away every day. She never escaped the burden. "She does everything," I once heard a friend say at a c.o.c.ktail party, after someone asked how we managed. I resented the idea, because I knew it wasn't true: Johanna was almost always there, but because she felt everything deeply, a severe patch of pain or illness or unhappiness in Walker crushed her with sadness, and her sadness could then paralyze her. At times like that we relied on my more earthbound mantle, my bullheaded core.

Sometimes I was too tired to say h.e.l.lo 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, h.e.l.lo, 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 unantic.i.p.ated 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. n.o.body 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 f.u.c.king 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 That's okay, I'll take him to the doctor 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 coc.o.o.n 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 hards.h.i.+p, 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 s.p.a.ce in her privacy for my own tattered privacy, for starters. And how can I begrudge her that moment of friends.h.i.+p 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 a.s.sisted-living organization that may-may, with the intervention of the special-needs group-have a s.p.a.ce 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; s.p.a.cious 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 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 a.s.sures 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 sc.r.a.p 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 l.u.s.t, 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 pa.s.sed. 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 ways of looking. There was the glance-and-look-away: that was most common. Then there was the look-and-smile, to a.s.sure 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. of looking. There was the glance-and-look-away: that was most common. Then there was the look-and-smile, to a.s.sure 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 l.u.s.t to have a child of their own, came upon us clattering down the street, Quasimodo and his muttering minder, and clouds of alarm pa.s.sed 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 rea.s.sure 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 rea.s.sured 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 bas.e.m.e.nt playroom with Olga, where they often hung out-and then remembered the bas.e.m.e.nt 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.

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.

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 b.r.e.a.s.t.s 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! 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 b.r.e.a.s.t.s 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.