The Boy in the Moon: A Father's Search for His Disabled Son (7 page)

Who were the lucky ones this time? Who would stay, and who would breathe a sigh of relief and go?

My own worry ponged back and forth. Is it a cold? No, it’s cancer. No, it’s a cold. The doctors were always flummoxed by Walker’s condition, always asked the same questions, wanted the same details over and over again.

Yes, he eats entirely by stomach tube
.

Yes, we’ve tried feeding him by mouth
.

Chloral hydrate. Yes, by prescription
.

It’s not his ears. I know it’s not his ears because I was here yesterday about his ears, and it’s not his ears, he doesn’t cry like this if it’s just his ears
.

Yes, Doctor, I waited. I waited for five days, with him screaming all the time, before I even thought of bringing him here
.

All those stuffed animals in the hospital store in the lobby of the brilliant children’s hospital in the middle of the downtown of the brilliant genius city! And yet the place was filled with doctors who couldn’t help my boy. I developed a degree of skepticism toward the medical profession that tended to show itself after the fourth doctor in a row told me something I already knew. Sometimes they saw my skepticism and agreed with it, quietly admitting their own helplessness, which made me like them again. Sometimes they spotted my frustration, and stayed away.

I learned an almost geological patience. I knew the hospital like I knew my own basement, all the tricks of the place: the most convenient end of the parking garage (the second level, before the first was even full, near the north elevator), where to validate parking, the best time to line up for the best coffee (before 7:45 in the morning, or after 11), how to work the prescription counter in the pharmacy to minimize the wait. I knew how to find Physio and MRI and Dentistry from memory. I knew what I would see roaming the floors of the place—the children themselves, with their strange afflictions, heads the size of watermelons with bright red newly stitched surgical gashes running from ear to ear, braces and casts, greyish-yellow skin, the resigned eyes, a resignation deeper and more profound than any adult’s could ever be.

I knew what to do in response. I knew to smile. Smile for every one of them. Nothing too obvious; I knew what it was like to have someone pander to Walker, I didn’t want that special treatment. But an openness, a lack of hostility and fear nonetheless, that was the trick. It was a form of meditation. But always I was looking, and silently asking: what happened there?

In some ways, for all the tension, Emergency was easy—because there was an ease to the department as well, a straightforward, fact-based calm devoid of worry. Here in Emerg, worry is beside the point: you’re in the maw of it now, it’s as bad as it gets, you have to get through it. I knew doctors who admitted privately to the secret appeal of emergency medicine: they were too busy to contemplate the sadness of it all. Their work profoundly unreflective, liberating in its mindlessness.

You can sit and wait in that calm for a long time as a parent, without minding. You look around. The technology, everywhere, on carts, an entire science on wheels, but also replicated at the bedhead in room after room, the same clean new tubes and bottles and valves over and over again, because of course our individual weaknesses are the same. Countless heavy-gauge yellow plastic waste-collection bags, for toxic bloods and spent dispensers, an entire industry (safe disposal!), money to be made from the garbage of the trauma of the body. The smells: antiseptic, coffee, puke, muffins, fresh linen, shit, worry, fear, grief. The last the worst: a dry smell, like stale ground, like hot pavement. And hand-washing, again and again, the splurt of the sanitizer, the Saran-Wrappy sound of a pair of hands spreading goo over themselves, the holy ritual of precaution. Choirs of crying. Clacking gurneys. Ambulance drivers making light banter with victims. Curtains hiding unknowable despair. The questions: Is it curable? Can they see my fear? And the inevitable comparison: Is my child better off than that child?

Through it all, you hold your child’s body, hold its flesh and heat close to you, like a skin of fire, because you need to hang on to what life there is. The need to eat drives us, sex makes us shameless, but touch is our truest hunger. Just hang on. Just hang on. Just hang on. Just hang on.

And gradually, without you noticing it, something changes, and you don’t have to hang on quite so tightly any more, or else there is nothing left to hang on to. The crisis passes or resolves. All of it incommunicable and yet, much later, impossible not to talk about ad nauseam.

If you’re lucky they let you both go. The most liberating sensation of all, when you finally leave the hospital again in the early morning, before the sun is entirely up, the sidewalk still damp from the dew, your child safe again, for now. The way the world seems to start over. By the time you find your car—level two, near the north elevator—you’re making plans again.

Throughout these years, on half-sleep, my wife and I fought a lot. Like most CFC parents, we argued more about sleep than about anything else: who had been able to sleep when and who hadn’t, who deserved to sleep in and who didn’t. It’s mostly the same argument. It goes like this: in the middle of the night, though it’s Johanna’s turn with Walker—and it could easily be the other way around—I can’t sleep and head downstairs to the living room to read. Five minutes in, I hear Johanna: “No, Walker, no!” A minute later, she appears at the foot of the stairs—naked, her skin still lightly tan (even in January), exhausted. Walker has been up for three hours and has just head-butted her and erupted with laughter. “Can you take him?”

I sigh (a mistake) and say (another mistake), “I had him last night for three hours straight in the middle of the night.”

“Forget it.” She stalks off. “Never mind! Sorry I asked!”

I follow her upstairs, recanting.

I pass her and get to Walker’s room first and lie down with him. By now my poor wife is so tired she refuses to let go. She shouts, I shout, I close the door. She comes in again, so I nudge her out, close the door again and bar it with my foot. I’m not exactly rational. When I open the door again, I can hear Hayley, in our bedroom (the endless game of musical beds, to accommodate the boy), asking what’s happening. I begin to apologize profusely to her mother. It’s not entirely sincere, but sometimes in these volatile battles it does the trick.

But there are other times too—moments of unstoppable pleasure. The four of us in bed together on a Saturday morning, Walker on his knees, towering for once over us all. This is something, you see: every time he is happy, he is as happy as he has ever been. Hayley, a delicate and skilled ballet dancer, twisting with Walker to music on the stereo, Walker on the moon with joy. Minutes from his life. Everyday occurrences for a normal child. But I know their true value.

Shortly before Walker turned two, we heard about a CFC study being conducted at the famous Children’s Hospital of Philadelphia. We drove ten hours to get there. At the end of a day of examinations we finally met a doctor who told us something we didn’t know. His name was Dr. Paul Wang, and he was a developmental pediatrician.

Wang conducted a series of tests. He was a slim man with a high forehead and a quiet voice. He showed Walker some line drawings, a light, a puzzle; Walker threw them on the floor. After an hour, the doctor was done. Walker wandered over and climbed into my lap.

“As you know,” Wang said, “there are three general levels of cognitive delay, or retardation—mild, moderate, and severe, sometimes called profound.”

“Which one is Walker?” Johanna asked.

“If Walker continues at his present rate of development, then he might be diagnosed with moderate mental retardation as an adult.”

“Moderate?” Johanna said, and put her hand to her mouth. She was already crying. (I hope I held her other hand.) “I was hoping for mild. Will he ever be able to read? Or … drive a car?”

“I doubt it.” This was bad news. Moderate retardation is still catastrophic, and there was nothing to say it wouldn’t get worse as he got older. He would need lifelong super vision, support in his living arrangements. “At this point, little definitive information is known about children with the CFC syndrome.” The doctor judged Walker’s overall development to be at the ten-month level. Ten months. Less than half his age. “As he gets older, of course, the differences will become more noticeable.”

Wang turned to me. “Do you have any questions?”

“Just one. We rented a cottage this summer for the first time, north of Toronto. It’s a very remote place, very quiet. An island, no one around but us. Walker seems to love it. It changes him, calms him. It means a lot to me, that place, and how it changes him. Will I ever be able to explain all that to him?”

Wang shook his head. “Not rationally, probably not. But“—he stopped, thought—”it sounds like he already understands it.” Another pause. “The Buddhists say the way to enlightenment, to pure being, is by getting your mind out of the way. I’m not trying to be trite, but Walker already knows how to do that. He is pure being. He may be developmentally delayed, or moderately retarded, but in that way, he’s already miles ahead of most of us.”

That was the first time someone suggested Walker had a gift the rest of us didn’t.

Gradually, as the endless routine of caring for him and watching him and stopping him and stimulating him became familiar, my fear subsided, and my grief was transformed into an unusual loneliness. Life with him and life without him: both were unthinkable.

As much as I tried to consider alternatives, I couldn’t imagine not caring for him every day: couldn’t imagine a day without the morning wake-up, the cleanup, the dressing, the school, the return home, the tired wailing, the sudden change and the bursts of sunny happiness, the feeding, the pointless teaching, the hilarity, the hospitals and doctors, the steady worry, the night rambles, all repeated every day until it ended, however that happened. There was nowhere we could afford to put him, and there was nowhere to put him anyway.

Our friends offered to take him, to give us a weekend away. We did that twice in twelve years. Each time it was a different couple, our closest friends, a single night each time. They volunteered many times before we agreed: caring for Walker was a complicated thing to ask someone to do, after all, what with all the tubes and feedings and drugs, and the incessant hitting and crying. They wore one look on their faces when I dropped him off—attentive, but eager—and another thirty-six hours later when I picked him up, the look of someone who has just had 150 house-guests for the weekend, during which the entire plumbing system has exploded. I saw the same stunned gaze a few weeks ago on the passengers of a plane that crash-landed safely and miraculously on the Hudson River. Those were the looks our friends had after a weekend with Walker. I understand completely. But I will always be loyal to them because they tried—they tried to reach down into our darkness and hold us. I cannot tell you how deep that well felt, how far down they had to reach. I never asked them again. It was, as I always said to Johanna, too much to ask.

“I wish people we know offered to take him more,” she said one night.

We were talking in bed, one of the rare nights Walker fell straight to sleep. Lying next to each other in the darkness was so rare by then, it felt exciting again. I could feel her warm skin against mine, thrilled by the relative novelty of a grown-up at my side. The room was so dark we couldn’t even see one another, but we spoke into the black night anyway. A small act of faith, and someone to listen.

“I mean, no one in my family or your family has ever offered to take him for a single night. My mom, once. That’s it.” I was shocked, not just by the truth of what she said, but by the very audacity of what she was suggesting. Asking someone to take Walker! Who the hell did she think she was! My parents were in their eighties, and they were afraid of Walker, afraid they wouldn’t know what to do. My sisters lived in distant cities. My brother, who lived in Boston, and his partner, Frank, offered, but I couldn’t bring myself to impose on them: they had no children, their house was too perfect to wreck. My wife’s sister was single and lived in Los Angeles; we had no family living nearby, and no extensive community in the city. It wasn’t just too much to ask, it was too much to imagine.

“Our closest friends have taken Walker into their lives as if he were one of their own kids,” I said. “All those weeks at cottages, dinners at their homes. They didn’t have to do that.”

“But one night? I would have done more than that for them.”

“But you know what it’s like to do it. You have a kid like Walker. They don’t. Most people are terrified.”

Speaking the words into the black night, our bodies touching, remembering luck and good fortune.

It was too much to ask
.

At dinner parties, we ate in shifts, one of us eating, the other wandering hand in hand with Walker, to keep him calm. If he got carried away and stroppy, if he began to whack his head uncontrollably, I sat him on my shoulders or strapped him into his stroller and took him outside: we’d leave and come back twenty minutes later. If I caught a whiff of a diaper, I whisked him away. We insisted on maintaining ordinary routines and customs. “He’s fine,” friends said to me when they invited us over for dinner or drinks, but I knew his buzz-saw scream and I didn’t want to be responsible for other people hearing it; I didn’t want them not to invite us any more, because they were all we had. In those days I still thought Walker was a reflection of me, I didn’t think of him as a separate being. When he was calm Walker made his way from guest to guest, crawling into their laps, playing with their watches and their bangles, drooling onto their pants and shirts. He was a steady reminder not just of his presence, but of the existence of all children like him, the children we so often try to forget. For this reason we tended to select our dinner guests carefully. If he attached himself to someone, I intervened: “Here, I’ll take him.” Many objected and told me to go away; many did not. You could see the reserve in the eyes of the latter, in their posture: they kept talking, but they didn’t resist giving him up. Who could blame them?