The Boy in the Moon: A Father's Search for His Disabled Son

by Ian Brown

  I use the word retarded, for instance, though never to describe a disabled person: it’s insufficiently descriptive applied to a human being. But it’s evocative if you’re describing an inanimate design, or an especially recalcitrant aspect of bureaucratic behaviour. Sometimes I’ll use it at a party, and I can sense the person I am speaking to rearing back, however imperceptibly, at the sudden presence of what is supposed to be an unusable word; I can see him note the usage, and I can see him decide not to react, because he knows I have a disabled son: he must think, well, if anyone can use it, he can use it. It needs to be repurposed.

  He loved women, the prettier the better. Even as an infant he would raise his arms to be picked up—he couldn’t sit up on his own until he was nearly a year old—or, later, climb into a woman’s lap and immediately peer down her neckline. Then he would feel her up. I thought it was accidental, but Johanna’s friends remarked how intentional it seemed. He loved anything shiny, fingering it close to his wonky eyes. Our friends called him “the jeweller.”

  Our close friends, that is. To others, at least for the first few years, I never mentioned Walker’s difficulties. I wasn’t ashamed of him. But I didn’t want sympathy and I didn’t want him to feel he needed it either.

  He stayed in my mind. Not only darkly, or as worry, but as a mental talisman. So did my daughter, of course. But I was always catching up to Hayley, whereas Walker moved slowly and could be tracked from standing. His aura, the fact of his existence, turned up everywhere, unexpectedly: in the lyrics of a Neil Young song at the gym (“Some are bound to happiness / Some are bound to glory / Some are bound to loneliness / Who can tell your story?”), between the lines of a Norman Mailer essay read during one of my bouts of insomnia. He turned up in other people’s conversations. Once, at a cocktail party—this would have been the summer Walker turned three—I overheard a man I had known well for a long time trying to explain to another friend how people communicated with my son. “It’s hard to describe,” he said. He had a drink in his hand. “His father has his own babbling language. It seems to work as well as anything else.” I couldn’t tell if he approved or not, but it was the first time I heard what Walker and I did with each other described as language.

  I often wondered if we were imagining Walker’s progress, inventing the connections we thought he was making. Did he really say “Heh-Heh” when Hayley was nearby? Or was he just breathing? When I said goodbye to him, and leaned over and kissed him, did he really say “Bye”? Or was he just breathing? Johanna heard it too: “He just said goodbye!” she would say, followed by “I’m going to cry,” experiencing yet again the instantaneous hyperplasia that marked our days. He made people feel things. But did he feel anything? Did the outline of a boy I saw beneath his stolid surface, beneath the dead-calm pond of his mind, actually exist? Or was it wishful thinking? I was often convinced our effort to perceive a whole being in his stunted parts was an act of almost reckless faith, no different from that of any other zealot—from, say, the mother of the Houston TV evangelist I once met, who told me in no uncertain terms that heaven existed, that she was going there, and that God had already decorated her part of it, as he did for each of his faithful, according to her personal tastes. “My heaven will be full of water,” she said matter-of-factly, as if she were describing her favourite resort. “Because I love water.” Coarse speculation, but how was she any different from Johanna and me? Who doesn’t want to believe there’s a heaven? But that doesn’t mean it exists.

  And yet this constant questioning, filtered through Walker—does he mean what he’s doing, or not?—was also a model, a frame on which to hang the human world, a way of living.

  The summer Walker turned twelve, we took our first long holiday without him. It was the same summer he learned to respond most of the time to a request for a high-five. While Walker was in Toronto at a respite camp, Johanna, Hayley and I took a week away at my brother Tim’s house in the town of Rockport, on Cape Ann, north of Boston. Tim and I had spent our summers in the town as boys, with our parents and sisters; we learned to swim there and sail, to eat a lobster properly, to take pleasure in the feel of the sea. We became independent there, and friends.

  The house was on the ocean, a square, immaculate dwelling that looked out over the Atlantic onto Thacher Island, a shoal so dangerous it sported not one but two lighthouses. It’s one of my favourite places on earth, and it always makes me think of Walker: he had been with us the first summer we stayed there, before Tim owned it, the first summer he and I rented the house together. Walker was born in June, five weeks premature, but we drove to Boston in August anyway, Walker barely six weeks old, back before we knew something was wrong, when he just seemed like a difficult kid to feed. We thought we could manage anything then. For two weeks my wife sat in a chair in the kitchen of the rented house by the sea, trying to express fluids into our weird little son while gazing out at the twin beacons.

  The chair had green cushions and bamboo arms. I looked at it so often that first summer of his life I made a water-colour of it, a painting my wife later framed and hung on the wall of our bedroom, near my side of the bed. For a long time it was the first thing I saw when I woke up in the morning. She meant it as a compliment, but I couldn’t help but wonder if it wasn’t an admonishment: don’t forget about the boy.

  Now he was twelve; we were back by the sea, our first time without him. The chair was gone too. The first morning I woke up before anyone else and climbed down over the granite rocks to the ocean for a swim, naked. The ocean was rough and it was hard to get into the water, and hard to get out again. Afterwards I made my way back to the outdoor shower and rinsed away the salt and got dressed and made coffee and read the paper and looked at the sea. I was by myself. It felt like paradise. I didn’t even think of the hours I had spent in that room with the boy, twelve years earlier. I am glad there is still a place, a sanctuary of sorts, where my concern for him cannot reach me, where I can forget him at least momentarily. But I always miss him when this happens, and he always gets there, as he has now in my memory of that kitchen by the sea. Such a luxury, the luxury of no concerns! Of not having Walker on or in or under my mind! Without him, for a short stretch I could do everything as I once did it, in deliberate steps, the way you can when you don’t have a handicapped child.

  But even there Walker found me. That morning,* having returned from my swim in the sea, wandering through the house, I began leafing through a catalogue raisonné from an exhibition of Edward Hopper’s paintings. Hopper had lived down the road in Gloucester, had created some of his most famous pictures from the grave and uncompromising local light. In 1947, Mrs. Frank B. Davidson asked Hopper what he thought of abstract art. The great representationalist wasn’t impressed. “There is a school of painting called abstractionist or nonobjective,” he told Mrs. Davidson, “which is derived largely from the work of Paul Cézanne, that attempts to create ‘pure painting’—that is, an art which will use form, color and design for their own sakes, and independent of man’s experience of life and his association with nature. I do not believe such an aim can be achieved by a human being. Whether we wish it or not we are all bound to the earth with our experience of life and the reactions of the mind, heart, and eye, and our sensations, by no means, consist entirely of form, color and design. We would be leaving out a good deal that I consider worthwhile expressing in painting, and it cannot be expressed in literature.”

  The first time I read the passage that morning—it was still before breakfast—I thought, this is exactly my error with Walker. I’m trying to see in him things that aren’t there, events “independent of life and my association with nature.” We were the abstractionists where Walker was concerned, insisting there was a painting, a coherent idea, albeit in radical form, that no one else could see. I kept rereading the passage, and the more I read it, the more I began to think that there was very little difference between what Hopper tried to do on canvas or paper and what we tried to do on the blankness of
Walker: we described what we saw, and then tried to determine what it meant, how it made us feel, and whether it was realistic.

  An hour can pass that way, triggered by the mere thought of him.

  At home on his neighbourhood tours with Olga, Walker had a vast circle of acquaintances. Strangers approach me even now and say, “You’re Walker’s dad.” It makes me feel his brilliance. He was well dressed too. Olga bought him the latest gear at Gap for his birthdays and I occasionally snuck out on my own to pick up something. I can’t describe the pleasure it gave me to buy his first big-boy shirt: he looked so sharp and cool. I bought him an orange skateboarder sweater, I bought him his first jeans, his first khakis, his first sneakers, his first baseball cap, a flight jacket with a fur collar, a T-shirt from wherever I travelled. I bought him an undershirt that was smaller than my hand, a pair of sunglasses he despised. Hat and gloves (all hurled aside with vigour), socks, beaded Indian belts. All the emblems of a normal boyhood. My longing, not his. One day I’m going to take him with my father and brother to buy his first tie. I know it’s futile: the bib he wears to catch his drool will cover it. But that might be the only male ritual we pass down to him.

  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.