The Boy in the Moon: A Father's Search for His Disabled Son (25 page)

At eighty, Vanier was preparing for the end of his life. He was wary of public honours and awards, and didn’t want to be cast as an expert. “I don’t want to be more of an authority than I already am,” he said to me the next morning. “I want to be less of one.” He didn’t want to be bitter, the way so many old people were, “upset at the grief of not having power.” People keep thinking they are supposed to behave one way or another, think one thing or another, believe in one God or another, but “you don’t have to do anything. You have to cross out ‘have to.’ Just be. And let it come. What is to come will come. The greatest fear of human beings is the fear of power, and the fear of failure, and the fear of guilt. That we are guilty. What of? Disobeying the law. But what law? We don’t know.”

“Oh,” I said. “So the guilt is unavoidable.”

“Yes. That’s the problem. There’s a really interesting text in Genesis, which is one of the oldest books we have about the beginnings of humanity. At one point Adam and Eve separate from God. And God runs after them. He says, ‘Where are you, it’s me, God. Where are you?’ He doesn’t say, ‘You’re no good.’ He just says, ‘Where are you?’

“And Adam responds, ‘I was frightened because I was naked. And so I hid.’ So: fear, nakedness and hiding. What is that nakedness? It’s our mortality. Whether we like it or not, we are not in control. And so, the whole reality for human beings is to accept oneself as one is.”

“Walker,” I said, suddenly, “he can’t speak. And I have a language with him where I connect with him by clicking. And he recognizes it, and sometimes responds.” I did a little imitation of our clicking.

“He’s clicking, and you’re clicking, and I call that communion,” Vanier said. “You’re vulnerable to him, he’s vulnerable to you. You’re not doing something for him. You’re just with him. Clicking. I like that expression. So when you’re with Walker and you’re clicking, you’re grateful for one another. You can imagine how grateful he is, because this is Dad, looking at him. And you’re grateful, because he’s looking at you, at the child within you. Not looking at you as somebody who’s written the best something or other. He’s looking at you as you really are in the depths of your being.”

I’m not suggesting this is the only way to understand a profoundly disabled boy. But Vanier said these things. Sometimes they made sense to me, and sometimes they seemed the exclusive thoughts of a man with a deep religious faith I did not share.

I took comfort in what Vanier said about Walker’s value, and yet the effort of believing it was sometimes exhausting.

Later that day, the day of my bakery breakthrough, I came upon Francine, taking the sun in her wheelchair. She was parked on the path that led from La Semence out to the road; Lydie, the pretty assistant from the south of France, was fifteen feet away, raking the garden.
“Comment ça va?”
I said to Francine, and touched her shoulder. I was already moving away when she grabbed my hand, and then my arm. She was powerful; she pulled my face close to hers. She was spastic, palsied, but her mouth was open, making growling noises that got louder and louder. Her mouth was near my ear, her teeth a derangement of spaces: I thought she was going to bite me. I didn’t know what to do, so I hugged her, gave her a kiss. I looked up, and Lydie was watching us. “I’m sorry,” I said in my bad French. “I think I upset her.”

“No, it is good,” Lydie said. “She likes men.” Then she turned back to raking the leaves.

By the time Walker was two, I seldom thought about him without also thinking about death—mine, mostly, but sometimes his. At night after he fell asleep,
if
he fell asleep, or in the middle of the night if I woke and he did not, I saw the years stretched out ahead of us, unchanging. I wondered if I would have an opportunity to do anything but care for him; wondered whether caring for Walker eventually would erode and erase my affection for my wife. I imagined where all my worry went, what abscesses and cankers it was breeding.

But mostly I worried about dying: about going too soon, before I had a chance to arrange the future, and what would happen to him afterwards. I wondered if it might be a relief if he died, and whether it might be a relief if I did too. Money was a constant worry, a canyon. Because I didn’t want Johanna to be stuck with the double burden of looking after Walker alone and making the family’s income by herself in the event of my predeceasing her (as my bank manager put it), I bought mortgage insurance. That was $500 a month. Olga’s salary and Walker’s formula sucked away more than $40,000 a year. (For many years Walker’s formula bill was $800 a month, four times the cost of regular infant formula, and not covered by my benefits at work—food, after all, is not a deduction. I spent another $800 a month on groceries for the rest of the family, and we ate well for that; Walker’s had to be some fantastic formula! These days it’s $1,200 a month because it is, according to the manufacturer’s description, “pre-digested” for children who suffer from reflux.) Prescription costs, medical devices, even the toll for parking at the Hospital for Sick Children (at least $9 every time we were there)—it all added to the usual wear and tear that a family puts on a health plan. It was always interesting to see when our benefits would top out: mid-August? Or would we make it to September this year? Three years after he moved into the home, I’m still paying off Walker-related debts.

On especially difficult nights, or if it rained hard, or most of all after the terrible arguments my wife and I sometimes had, strained by sleeplessness and ashamed of our failure with this strange boy, I asked myself if it might not be braver to take my life, and to take Walker with me. Suicide is not my default setting. But the hopelessness of life ahead, caring for Walker, could raise the spectre in me. There was chloral hydrate; there were pills. There was the car, there were places to drive the car off of, there were lakes to walk into.

One of my secret death fantasies was to pack Walker into a baby backpack I owned, a kind of Snugli, and take him high up into the mountains of western Canada in the winter, one of my favourite places on earth, and lie down in a snowbank, and end it there, quietly, hypothermically. I imagined the venture in complete detail, how I would pick a moment when Johanna was at a movie and Hayley was at school, how I would get him out of the house and to the airport, with all his gear and all the ski equipment. Unfortunately that alone derailed my death fantasy: if I could get through that fucking nightmare, the airport with Walker and skis, I could survive anything, and there was no need to kill myself. It wasn’t quite what Nietzsche meant when he wrote that the thought of suicide has saved many a life, but it would do.

And anyway I couldn’t do it—because of Hayley, because of Johanna, because of me, and because of Walker too. Because they expected me to keep going. Because they needed a good example—the standard chant of the well-meaning father.

Occasionally I had an even more radical thought: I could just fall into caring for Walker. That thought had some appeal too, a soft smothering fated feel. I suspect many mothers, and especially many single mothers, know it—neither optimistic nor pessimistic, merely resigned. At least that way I would avoid the resentment, the awful changeovers from my watch to my wife’s and back again. One of us would at last be in charge. Taking care of Walker was so all-consuming that all the time you weren’t caring for him, you had to spend catching up—on sleep, on work, on chores and tasks and taxes and returning phone calls, not to mention whatever exigencies and emergencies were waiting as far as his care was concerned. Whoever was caring for Walker, the other person was perforce catching up, and so it always felt as if you were doing it alone, on your own. You couldn’t help but feel resentful.

Do you recognize any of this? I suspected on those dark nights that no one else did, that no one else knew what this was like; I was convinced we were alone. It’s hard to explain how we felt for having failed to teach Walker to sleep or speak or eat or pee or even look at us—can you imagine the magnitude of that failure? I know it is not rational, but we felt responsible. You can’t help what you feel, not in the middle of the night on the back porch of a little ramshackle house in the middle of the city, with the white fluorescent light from the kitchen of the Chinese family next door shining out over your backyard like a floodlight in a concentration camp, with Young Frankenstein himself asleep upstairs on the third floor, the third floor that is like Everest to reach some nights. There were nights I was so far gone, so tired, so spent and totalled, I would start to laugh as I plodded down the hall, and I would keep laughing for minutes at a time. A madman. I felt like a well-trained dog who realizes he cannot learn this last new trick. Christ, I was so tired: I can remember literally lifting my legs with my left hand, one after the other, as if they were logs, hefty stumps, up the stairs, and pulling on the banister with my right hand for leverage. I can remember thinking:
I can’t do much more of this
. I was forty-four years old at the time.

One evening I was so exhausted I fell down the stairs with Walker in my arms: my heel slipped on the lip of the step, I fell backwards, the familiar bolt of terror sucking my breath out of my throat, that thought,
Walker
, flashing through my whole body, whereupon I curled my arms around him and made a sled of myself, and we shot down, Walkie on my chest, until we bumped to a stop at the bottom. He laughed. Loved it. And so, I did too. He took me into darkness but he was often the way out of it as well.

After three and a half days, L’Arche started to feel normal. Everyday life there had a natural rhythm and sense of purpose, however unconventional it was. I had a lot of time to think.

I went to France because I wanted to see if there was a graceful, meaningful way for Walker to live in this world—to see for myself if it was possible to create not just a roof over his head for when I was gone, not just an ad hoc solution to his needs, but a community and family he might call his own, even—this was the most radical notion—a liberty and a freedom he could claim.

And if that kind of community was possible, how could the cost be justified? Compassion wasn’t a good enough reason, historically. Could creating and sustaining that sort of community also provide a substantial, concrete benefit for the rest of us, the non-disabled? I wanted to know if Walker’s life had some value. It seemed to me it did. Vanier said it did.

Gilles Le Cardinal had gone one step further. He had proof.