The Boy in the Moon: A Father's Search for His Disabled Son (4 page)

By the late fall of 1996, from what Norman Saunders could see, Walker had nearly all the signs of CFC. The potential consequences were sobering: learning difficulties, hearing loss, intellectual impairment, language impairment. “Socialization skills may surpass intellectual skills,” one researcher noted, rather gracefully. Ten percent developed psychiatric disorders in the teen years.

That November, Saunders referred Walker’s case to the genetics department at the Hospital for Sick Children. At home, what had begun as a normal concern for a preemie baby had mutated into a twenty-four-hour state of turgid alarm. There was something wrong with our boy.

Any parent of a child with a syndrome remembers the day he or she is told to see the genetics department. It is the second circle of diagnostic hell. What has been, to that point, a matter of health, something you could fix, is suddenly a matter of science, carved in genetic stone. I still remember the way that day closed in, the way time gelled, went still. There had been an accident miles earlier on the divided-cell highway; we had to go back. The shock was similar to that of losing one’s wedding ring in the sea: you knew it was gone, it was unrecoverable. This
wasn’t
something we could fix, it felt ancient, primordial. One day Walker was part of life, the next he was a misstep of evolution. I hated the idea, but I now understood fate, what the Greeks talked about. Suddenly, nothing seemed to move much, and I felt a decade older.

The building that housed the genetics clinic at the Hospital for Sick Children resembled a futuristic spaceship: stainless steel, clean, no nicks or flaws. Normally, the clinics and emergency departments and institutes and programs we visited with Walker were tiny madhouses—chaos, children crying in several registers at once. Mothers tearing their hair out. Social workers with clipboards. Doctors, the male ones, anyway, trying ever so delicately to avoid the fray. Machines beeping: I once counted ten different tones of
ping
.

The genetics clinic, on the other hand, was like the sperm factory in Woody Allen’s
Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask)
: clean, pristine, well ordered, neat. Nothing out of place. And quiet! No wonder: there were never any people around. It felt like a department where certainty reigned, where you might get a few answers. (Little did I know. To this day, despite repeated genetic testing, we have no confirmed genetic diagnosis of Walker’s CFC, even though his doctors are convinced that is what he has.)

Saunders referred us to Genetics in November; the request wound its way through the medical system, and by February we had an appointment. The geneticist’s name was Dr. Ron Davidson; his son was a geneticist too. He was a tall man with a confident voice, and he confirmed Saunders’ inkling: Walker had cardiofaciocutaneous syndrome. He was eight months old. That qualifies as an early CFC diagnosis even today.

“Now that we know what’s wrong, we’ll know what to put right,” Johanna said, touchingly, as we sat in Dr. Davidson’s office. She believed in medicine. She had wanted to be a doctor, had been a pre-med student for a year, before physics and organic chemistry finished those aspirations off.

The doctor was upbeat. “His developmental milestones are being achieved at a rate that is well within the normal range,” he wrote in a confirming letter after meeting Walker. (There were always confirming letters, following doctor’s visits. We have rafts of them.) True, “the feature of the CFC syndrome that raises most concern is the chance of learning problems,” but even here there was hope, in the doctor’s view. As the number of cases reported has increased, several affected individuals have been reported as having completely normal learning histories and normal intelligence.”

The syndrome was not hereditary: the chances of having a second CFC child were microscopic, although Walker had a fifty–fifty chance of having a CFCer of his own. “However, by then we will know a great deal more about the condition and the mutation that causes it, and there will undoubtedly be a variety of options available to him and his wife.” Walker’s wife! I have to say, I never believed it.

four

His infant head was overlarge and shaped like an olive, but the rest of him was as light as a loaf of bread: I could carry him in one hand. I called him Boogle, or Beagle, or Mr. B, or Lagalaga (because he made that noise), or simply Bah! (He liked
B
sounds.) As he grew older, we developed a private language of tongue clicks that only he and I speak. All we ever seem to say is, “Hello, it’s me, I’m clicking to you, and only to you, because only you and I speak Click;” to which he (or I) reply, I think, “Yes, hi, I see you there, and I am clicking back, I like it that we speak our private language, in fact I find it hilarious.” This is very enjoyable for both of us.

I could clap my hands and he would clap back; he especially liked it when I clapped his hands faster than he ever could on his own. It was impossible to take a decent photograph of him, except by chance, and then he looked like Frank Sinatra Jr. on a tear. He smelled warm, baked: his head to this day has the tasty whiff of a Zagnut bar. He never crawled, but began to walk at two-and-a-half.

The house was a well-organized nightmare. You couldn’t survive as the parent of a handicapped child if you weren’t organized, and my wife was. There were the famous laundry baskets of toys on every floor; plastic activity boards hanging off the backs of chairs in the kitchen and the living room; tubs of syringes and feeding lines upstairs and down; caches of diapers in a chest by the front door; troops of medicine bottles and ointment tubes marching through cupboards and across dressers and countertops.

He loved to touch things. The bottom three slats of every window blind in the house were mangled. His most developed consciousness seemed to live in his hands, in what he could manipulate—the genius light switch, the fascinating toilet-paper tube, anything that beeped or flickered. What he could touch, he knew.

The best part was the way he exploded with laughter and rocked into a ball of glee at some mysterious thing, which passersby loved. (For a while, I suspected he was rubbing his penis between his thighs, a traditional source of merriment for all boys.) As he grew older, he became slyer. He loved to clear tables and flat surfaces, especially closely guarded ones. He went for glasses of wine, which seemed to catch his eye, so we called him the temperance man. He would distract you, then wipe the deck and throw his head back with pleasure, momentarily cleverer than anyone else. Was that his secret project, to show us he was sometimes smart enough to fool us? That would not surprise me. His desires were invisible, unspoken, but that did not mean he had none.

He became a great wanderer, a lucky one. Here is one evening:

He is five. (At his stockiest, he looks three.) I leave him in an enclosed hallway at the foot of some stairs in a friend’s elegant house while we eat dinner. I know he can’t climb stairs and I know he can’t open a door.

Ten minutes later, I hear a tinkling sound. A beautiful sound, the noise of the air breaking, but unusual enough to go and see what it is. It’s Walker. He has done the unimagined and climbed the stairs and opened the door and is now gleefully and deliberately smashing the last of seven wineglasses on a Noguchi coffee table. Not a scratch on him. We come to call that evening Kristallnacht.

It was not a particularly funny joke, but if you spend a lot of time with a disabled child, with a child who was not supposed to live and whose survival nevertheless radically changed your life—especially if said child is your child—you feel you can break the rules. The boy recalibrates the world. The crisis of so-and-so’s unhappiness about her job or his inability to meet a woman who will pay him what he considers to be a sufficient degree of attention pales next to the crisis of how to stop Walker from beating his own brains out. The opinion of other people matters less and less the more you walk down the street with a boy whose lumpy looks attract attention, stares and smiles alike. One’s life is suddenly marked by other exigencies.

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.