The Boy in the Moon: A Father's Search for His Disabled Son (11 page)

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 god, 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
.

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 Japanese sweeper, the tiny silky one in the summer, the black all-purpose cotton she wore when winter chilled the house. My
wife
, that ancient word; the mother of my children, the mother of Walker. (There was the sourness again.
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 cocktail 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 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
.