The Boy in the Moon

by Ian Brown

  Even on that inaugural visit, however—I know this now from examining Walker’s medical records—Dr. Saunders began to note odd details in my son’s chart. Palate unnaturally high. Flaccid muscle tone. Small palpebral fissures, or eye openings; lowered, rotated ears; a fold in the skin on his nasal bridge. Hayley had been a star baby. Saunders wasn’t so enthusiastic about her brother.

  Two days later, Walker had lost most of the weight he’d gained. Johanna was beside herself, deep in a hormonal trance in which her only concern was to get the boy to eat.

  He didn’t seem to be able to suck, and he needed an hour to ingest half an ounce of milk. When he did get it down, he threw it up. His body didn’t want to survive. “We do want this child to live, don’t we?” Saunders snapped one morning on yet another of our visits to his office. I decided it was a rhetorical question.

  Saunders’ question implied another, unstated: “This child cannot live without going to extraordinary lengths; do you want to go to those lengths and live with the consequences?” Even if he had asked it outright, I can’t imagine my answer would have been anything but yes. All the ethical theorizing in the world can’t change the pressures of the moment: the squalling baby on the examining table, his distended stomach, the doctor’s obvious concern, his father standing gormlessly by. The call of the physical child and his need.

  It was only later, alone, at night, having battled for hours to get him to sleep, only to find myself sleepless, that I sometimes considered the cost of his life, and the alternatives. Had the doctor been asking me if I wanted to let Walker’s life end, as nature would have ended it on its own? I sat on the back steps of our little house in the heart of the city at 4 a.m., smoking and thinking the unthinkable. Criminal thoughts, or at least outlandish ones: what if we don’t take extraordinary measures? What if he gets sick and we don’t work so hard to get him better? Not murder, just nature. But even as I considered these grave plans, I knew I could never enact them. I’m not bragging; my hesitation wasn’t ethical or moral. It was a more medieval urge, instinctual and physical; fear of a particular mode of failure, fear of retribution if I ignored the dull call of his flesh and his body and his need.

  In any event I felt like an ox slipping into its yoke. I could feel the heavy tragic years coming on ahead of me, as certain as bad weather; there were nights when I even welcomed them. At last a fate I didn’t have to choose, a destiny I couldn’t avoid. There was a tiny prick of light in that thought, the relief of submitting to the unavoidable. Otherwise, they were the worst nights of my life. I can’t explain why I wouldn’t change them.

  Before Walker was born, after the birth of our first child, Hayley, my wife and I had the usual modern conversations about whether we could handle another. I loved Hayley, she was the best thing that ever happened to me, but I wasn’t sure we could afford a second child. I wanted Hayley to have allies in her future fights with us, even liked the idea of a larger family, but Johanna and I were both writers, and never had much money. I wanted some reassurance I would not have to give up my ambitions. A friend said, “Tell your wife you don’t want to be a stay-at-home dad,” which I did, to which Johanna said, “I know.” It was my porosity that worried me more, my susceptibility: I was a sucker for a point of view. And of course there was the immensity of the decision itself, to bring a child into the world—a major step in life that could end in failure or, worse, heartbreak. As a young single man, I had often seen married couples arguing in the street, or eating dinner together in restaurants, silent for half an hour at a time. Why do that? I thought to myself. Later, after I married, I saw couples harried by children, and wondered: why do that? And to see a couple with a handicapped child filled me with horror. Not the sight of the child, but the thought of the burden. I couldn’t imagine anything worse.

  The argument about a second child ended the way that argument often does: we let nature take its course and quickly produced a brother for Hayley. She was three when Walker was born. Some part of me wasn’t at all surprised that Walker was handicapped: he was my comeuppance, my education. From the first night I took him in my arms in bed to feed him, I could feel that chain between us, that chain that said we were linked, that I owed him.

  After Walker was born, I thought the conversation about more children might abate, but instead it intensified: now Johanna was driven by a new need, for a third child. She wanted to bracket Walker with normality. She wanted to insulate Hayley from the loneliness of being raised with a severely disabled brother, who would never be the company for her that a normal sister or brother might. But it was unthinkable and I was the one who said no. The guilt that came afterwards was as inevitable as the weather.

  Walker saw the doctor three more times that first month. He was puking like a pro; he never slept. His mother was a ghost. Dr. Saunders was now noting anatomical details every visit: oval, spade-like thumbs, mild blepharophimosis (smallish, down-slanted eyes), orbital hypertelorism (eyes widespread too). He always used the scientific terms on the boy’s chart—it made for more accurate communication with other doctors. They were serious words, embodying a professional standard of exactitude. But Walker Brown was a hard boy to be exact about. Both his testicles, on the other hand, were now palpable, a small victory.

  “It’s still too early to get worried,” Saunders told Johanna.

  He had a talent for reassuring mothers, one of the reasons he was considered one of the best pediatricians in the city. He was just turning fifty, trim, well dressed (he insisted on wearing a tie), and he knew how to make easy conversation. Most of the mothers I knew had crushes on him. They tarted themselves up for the trip to his office when their kids needed a booster shot.

  What his patients didn’t know was that their beloved Dr. Saunders had a long-standing interest in rare afflictions and their human consequences. His wife, Lynn, had been a special-education teacher. Pediatrics didn’t pay as well as most other specialties, but it was hopeful medicine: most kids he could fix with swift and certain action. The times when he couldn’t reached a long way into Saunders: he saw something heroic in those children and in their lives. (Shortly before he died of colon cancer in the spring of 2007 at the age of sixty, he inspired the creation of the Norman Saunders Initiative in Complex Care at Toronto’s Hospital for Sick Children.) Privately, Saunders was obsessed with eighteenth-century British naval history and heroes. With the most broken kids, Saunders, too, became a navigator in unknown waters, an explorer.

  But his watchfulness with Walker drove Johanna crazy. She’d arrive home from an appointment and struggle through the door with a baby bag and a stroller and some new device to try to feed the boy, hand him to Olga and say, “I’m so upset with Norm. Normally he knows what he’s doing. But with Walker he just looks at him.”

  What Saunders was doing was trying to figure out whether the just-offness of the boy’s appearance—to say nothing of his limpness and failure to thrive—were signs of a syndrome. And if so, which one? There were thousands of medical syndromes and at least six thousand rare diseases. On its own, blepharophimosis (the extra fraction of space between Walker’s eyes) suggested any number of them: Van den Ende–Gupta syndrome, say, or Ohdo syndrome, or Carnevale syndrome. At the time the Internet was still a new device, into which geneticists poured lists of symptoms daily, which in turn made diagnosing a syndrome both easier and more complicated than it was before. It was like trying to find a particular plant in a vast garden of exotic flowers, each one more bizarre than the next.

  Slowly but steadily, Walker passed sixteen weeks of age. As the first autumn of his life greyed into winter, Saunders began to refine a diagnosis—not yet that something was wrong, but that something wasn’t right. The child was becoming more alert; his eyes, at least, were now tracking objects, even if his head was a bit laggy. He had started smiling. Good signs, the doctor thought.

  But at night at home, Saunders was leafing through medical literature on rare afflictions. He didn’t like what he found: specifica
lly, a research paper with pictures of children who looked almost exactly like Walker Brown. The anomaly was newly described and shockingly rare, a random genetic misfire that produced a wide-ranging group of related symptoms collectively known as cardiofaciocutaneous syndrome. The global effort to sequence the complete human genome was still years in the future; clinical genetics, its predecessor, was still mostly a detective game of observation and hunches. Symptoms overlapped with other syndromes, and misdiagnoses were common. Shprintzen syndrome looked like CFC—Saunders almost fell for that one—but it wasn’t the same: those kids had eyebrows. Noonan syndrome was far more common than CFC, and shared many features, but usually produced much milder developmental delays. Ditto Costello syndrome, with the difference that Costello children had “softer” features (whatever that meant) and were more prone to certain cancers than CFCers. Many geneticists believed CFC and Costello syndromes were only variants of Noonan; others insisted they were separate anomalies. My wife and I kept hoping someone would be specific, and specifically helpful, but the only thing geneticists seemed sure about was how little they knew.

  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 i
s. 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.