The Boy in the Moon: A Father's Search for His Disabled Son (5 page)

From a notebook I kept:

27 December 1997. Have to pay more attention to Walker’s diet. He had a doctor’s appointment before we left for Christmas here in Pennsylvania, and our pediatrician was surprised that he still can’t or doesn’t walk, crawl, strive to pick up objects and stuff them in his mouth, feed himself, swallow anything with chunks in it, or stack blocks. He was even more appalled that Walker still weighs only 20 pounds—half or at best two-thirds of what he ought to at this age, a year-and-a-half. The new fear is that his inability to put on weight will affect his intellectual development, even such as it is. So I spent a fair bit of time trying to figure out how to make egg custard, which a nurse thought would put some meat on his bones. But he has a bad cold, and bad swallow control, which means that he throws up half the time after a meal. I can see a GI tube looming in his and my future. Mostly, though, I fear for his loneliness. Lately I’ve begun to think that he is aware of it too—suddenly aware that he is not like everyone else, albeit unconsciously.

I seem to be on the verge of crying, so I will go
.

By the time Walker was three, his medical chart was ten pages long.

A pattern of afflictions had emerged early: bad chest, pneumonia, constipation, endless earaches, scaling skin. He didn’t sleep. We thought of him as affable, but he cried half the time.

At least at the doctor’s office you could ask questions. Returning home again was like entering a long hallway where the lights wouldn’t go on. My wife said she felt “as if a soundproof curtain has dropped over us.” Certainly any crisis with any child brings that curtain down: your focus shortens, you aim straight ahead. The difference with Walker was that the curtain was permanent. Before Walker, the future had looked like a series of discrete challenges, each to be overcome, resulting in (possibly callow) glory. After Walker was born, the future appeared unchanging, sad, full of obligation until we died—which only raised the gloomy prospect of what would happen to him then.

Early on—this too is common in the families of CFC children—we agreed Hayley shouldn’t be held responsible for Walker as an adult. But she took him in her stride. One day, I asked her why she thought Walker couldn’t walk and talk at the age of two. “I could walk when I was one because I was born with two eyes open,” she said. “But Walker was born with only one eye open.” She was four.

The CFC diagnosis was something to go on, but having a label still didn’t improve Walker’s health. Dr. Saunders’ notes became repetitive:
congested
and
coughing
and
otitis
and
failure to thrive
appeared in every entry. At eighteen months Walker neither spoke nor understood any words, couldn’t walk, had no gestures except raising his arms for “up” and the occasional smile. DEVELOPMENTAL DELAY, Saunders wrote, in capital letters on his chart. There wasn’t time in the day to wait for Walker to take in the trickle of food he could swallow, and Saunders ordered the installation of a G-tube. Until he grew stronger, he wouldn’t be able to eat; because he couldn’t eat, he couldn’t grow stronger. The G-tube made it easier to administer the growing list of medicines Walker needed for his reflux and his ear infections and his sleeplessness and his jitters and his rashes: Gentian violet, hydrocortisone, amoxicillin, azithromycin, clarithromycin, erythromycin (ever wider on the spectrum of antibiotic strength), cisipride, Keflex, Betnovate, Flamazine, lactulose, Colace, chloral hydrate. They sounded like the names of ambassadors to an inter-galactic conference of aliens. His chronic constipation (his muscles were too weak to move things along normally), made worse by the equally necessary chloral hydrate, often required not one but three drugs—lactulose as a sugary starter, Colace as the dynamite, and suppositories, the blasting cap itself. You had five minutes to take cover.

Nothing was ordinary. Like most kids, he had diaper rash—but because this was Walker, my compromised son, it was the Chernobyl of diaper blights, requiring a day in hospital. There was so much wax in his ears that we could have started a museum. For a period of ten months, he developed agonizing blisters on his feet that thwarted his already thwarted walking. They were three inches across, yellow, and showed up whether he was wearing socks or no socks, shoes or no shoes. They disappeared as quickly as they came. The doctors never did figure out why.

The diagnosis of CFC meant more appointments: the ear specialist, the eye doctor, the dermatologist, the gastroreflux expert, the neurologist, a foot doctor, occupational and behavioural and oral therapists, the geneticist, the cardiologist, the feeding and sleep clinics, even the drooling clinic. Their conclusion (and I’m quite serious): “Mrs. Brown, your son drools.” The dentist needed to place Walker under full anaesthesia to clean his teeth. Oral therapy was important if he was going to learn to speak, but two years yielded nothing; we switched to sign language, but he wouldn’t make the eye contact essential to learn sign, and his fine motor skills were too coarse to do it anyway. By then he was beginning to bang his head as well, which didn’t encourage his therapists.

The eye doctor couldn’t get an accurate reading on what his eyes needed, and Walker couldn’t say. Ditto his hearing. Added to the eleven times he was at Dr. Saunders’ office in 1998 alone, along with trips to Emergency, Walker logged a medical visit a week. And that was if he was more or less healthy.

Better to concentrate on his gross motor abilities, the experts told us: if he learned to walk, at least, he could vary his environment and stimulate himself that way, and would be that much less dependent on others for the rest of his life. That was the phrase:
for the rest of his life
. To teach him, we undertook a costly and radical Venezuelan therapy three times a week for two years. The medek method entailed hanging him upside down and pulling his legs into unnatural positions. The only medek specialist in the city, Esther Fink, lived forty-five minutes away by car, in a north Toronto neighbourhood heavily populated by Hasidim with a substantial number of disabled children of their own. It was another world, and I was suddenly part of it.

Walker hated the sessions, started screaming the moment we pulled into Esther Fink’s driveway, but he learned to walk. At least he had that. He could be what his name said he was. Maybe that was why we insisted.

The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.

I remember how proud I was the first day he went to school. By the age of three he was enrolled in Play ’n Learn, a daycare program that integrated normal and disabled children. I could spot the parents of the delayed kids in the school parking lot when I dropped Walker off: they were the ones who looked as if a bomb had just gone off in the back seat of the car. They were starved for contact and longing to tell the truth. One afternoon, I ran into a woman whose severely disabled fourteen-year-old daughter had died two years earlier. “Do you know the first thing I did—on the way back from the funeral?” she said. “I said to my husband, ‘Pull over. Let’s have sex.’” She later divorced him.

From Walker’s first Play ’n Learn report card:

Walker enjoys exploring objects by manipulating them. He turns objects through his fingers as he looks at them, and has also begun to bang objects together
.

Play ’n Learn’s theory was that integrating normal children and their disabled counterparts would sensitize the normals and inspire the delayed. The school boasted a full-time sensory integration therapist (CFC children are often overwhelmed by their senses and have to be conditioned to them, even to someone else touching their skin) and an occupational therapist, to teach basic concepts of sociability such as sitting down with others at lunch. To my surprise, Walker slowly became bolder, more outgoing. The staff (all women) were dedicated teachers of the disabled, optimists who saw hope in everything.

Typically, he produces open vowels and consonant–vowel combinations—which may include any of the sounds
[b, n, d, 1, y]
with an “ah.” Although he will not initiate an interaction, he enjoys having his peers around. When a peer is holding his hand, he seems to be content
.

It was the last line that crushed me. He needed someone to moor him.

The provincial government in Ontario, keen to show it was serious about education, insisted that all children be graded. Grades meant standards. The first time Walker arrived home from Play ’n Learn with a report card in his backpack, we learned he was improving at math. Math! And improving! We laughed like hell, and then we kissed him and said, “Well done, Walker! Two plus two is four!” We did that for a long time, held on to it like a rare, delicious treat. Not that we believed Walker could do math as we defined it. But it was a story he had brought us that anyone could appreciate, a detail of his life that made it out from behind the soundproof curtain.

What I couldn’t tell was what the routines meant to him. Did he know he was “painting” when the teacher was guiding his hands? He had a friend, Jeremy, but did he know what a friend was? He sat at the table with the other kids for Snack—a stretch of time named Snack, I loved that—but did he feel the communal buzz? What went on inside that thickened skin, behind that swollen heart? I didn’t care if he never threw a ball or tormented his sister or skied beside me or told a joke or dated a girl (though I would love it if he did). What I cared about was whether he had a sense of himself, an inner life. Sometimes it seemed like the most urgent question of all.

From the day he came home from the hospital as a baby, at two days old, nights were hard. If it was Johanna’s turn to put him to bed and sleep with him, I drove Olga home. The next night we’d switch. Our nights off from Walker duty were big events: I planned my week around them, however unreliable that plan was. (If one of us had to travel for work—something both of us did at least a few days every month—the other took Walker alone, night after night. That was exhausting, but it made us appreciate the nights that he slept: they felt like beautiful and unexpected gifts. A clear four hours for us was like a night’s sleep for anyone else.) After dropping Olga back at her apartment, I was free. I could go for a drink, a walk. Most of the time I snuck back into the house quietly, turning the heavy front door lock by hand, leaving my shoes by the door, hoping to get to bed without waking him, without hearing him crying or pounding his head. He had a knack for worming his way into my brain just as I opened a book or began to write a letter, and once I heard him, I was hijacked. I couldn’t bear the sound of his steady agony. But if he was asleep and I could stay awake, I could read, and did, voraciously. I have never appreciated words and books and time and the life of my mind more than I did on those stolen late nights. Dante,
The History of Mental Retardation
, books about deafness and about stuttering, novels about cowboys and reprobates, diaries of diplomats, Casanova’s memoirs. (Casanova claimed he didn’t speak until he was five, and then, when he did, he was lying on the
vaporetto
, moving down the Grand Canal in Venice. “The trees are moving!” he said, if my memory serves me. His parents, rather than being amazed that their lagging boy finally had spoken, immediately berated him for being an idiot. “The boat is moving!” they cried. Whereupon Casanova uttered his second sentence: “Well then it is possible the earth moves around the sun!” I admit there were days when I hoped for a similar outburst from Walker. Certainly I collected stories.) I read Chesterfield’s letters to his son, and Chester ton’s dull detective novels, and anything that took me away: Elmore Leonard and Chandler and Roth and Updike, books about fathers and collecting and obsession, essays about any variety of inner life, lives of artists and millionaires, and of course every scientific paper about CFC. And newspapers. One of my favourite photographs of Walker from those days shows him sitting in my lap in a reclining lawn chair on the deck of a friend’s cottage north of Toronto, beside a still lake. I am reading the newspaper, holding its pages open, frowning. Walker is leaning back against my chest, laughing like mad. We were both happy then.