The Boy in the Moon: A Father's Search for His Disabled Son (3 page)

On the other hand, a gable from an old gingerbread house stuck to a paper plate—petrified and long inedible—attracts him whenever he sees it. As does a plastic bag of Christmas ornaments, another Olga invention, good for a few hundred dozen hand-rolls a day. Panels and puzzles and balls and sparklers and buzzers and Plasticine, activity boards, pop-goes-the-weasel boxes, enough educational toys to change the future of Africa, dolls, stuffed animals, costumes—all languish like a reproach in a series of white laundry baskets.

Downstairs in the basement, in the old sauna we use for storage (who has had time for a sauna?), are even more unusual objects, the truly frightening stuff we were lent by the social services departments of various levels of government for the therapists to use when they came by the house. When Walker was an infant there was a good chance that whenever I stepped into our house I would find a woman in her thirties or forties in denim coveralls, sitting on the floor of my living room, patting him, stimulating his cheeks, manipulating his hands, patiently repeating the same sound or the same gesture over and over and over and over again. Every time I walked in and saw such a woman I felt both a pang of grief, as I remembered once more that I had a son who needed her help, and a surge of hope and gratitude—because perhaps this session would be the breakthrough that would send him on his way to a normal life. I still feel both lurches when I see him with a new, fresh, undefeated teacher.

To this day in the sauna, for instance, there is a set of plastic yellow half-buckets, each three inches high, each with a different gizmo in the bottom. One, for example, has a yin-yang wheel, a black and white swirl with a knob to twirl it. I understand the yin–yang wheel: infants respond well to contrast, to black and white patterns. Around the edge of the yin-yang wheel, in turn, are metal rivets, which ding whenever the yin-yang wheel is churned.
Ding ding ding ding ding
! Something vaguely Nepalese, Tibetan. Surely that would work for my little Buddhist? The gizmo, in any event, is inside, on the bottom of the yellow bucket. There are two holes in the bottom of the bucket, too, possibly finger grips, possibly drool-drains, possibly both. I have never been able to understand, quite, how to use this device, and I have never seen it hold Walker’s attention for more than two seconds—literally, not even for two seconds. But we keep it anyway, because maybe (as noted) this will be the magic bucket, the contraption that changes everything. A paper label has been laminated onto the outside of the yellow demi-bucket:

FINE MOTOR DEVELOPMENT MATERIALS
TWIST, TURN AND LEARN
FULL CHIME MODULE # 10

And beneath that, rubber-stamped in ink:

METRO SPECIAL
PROGRAM [VISION]

I don’t know which is more depressing: the awkward clunky design, the incomprehensible finger/drool holes, the bureaucratic stamps (#10, one of many), the full chime designation (perhaps the quarter-chime module would have worked more effectively?), or the even more bureaucratic division (vision) within the larger division (metro special program), with its inference of large and all-seeing provincial and national programs above, each nesting down, like a know-it-all, to smaller and smaller sub-jurisdictions until finally, at last, we reach this tiny, ugly, brutal, awkward, clumsy, two-holed yellow plastic corner of the system that has been reserved for my unfixable boy. The touching hopefulness and yet utter hopelessness of that label, the grunting Neanderthal conception of human nature (stimulus/response, good/bad, on/off) it reflects. Or is it just that there are four more yellow plastic activity buckets downstairs, just like this one but different? A plane with a movable propeller. A clown with a spinning bow tie. A bunch of flowers on wobbly stems. The major clichés, because children respond well to clichés—at least normal children do, but not Walkie. Each yellow bucket as awkward to operate as the next one; each one a reminder of how dark and murky and flat-out basic our understanding of childhood development actually is, how little we know. But stackable: the buckets have that going for them, they’re stackable. I know stackable, how crucial stackability is in a house full of junk and disappointment.

Every time I look at the yellow activity buckets (and I put them in the sauna so I wouldn’t have to look at them) I see the history of Walker’s life in their minute details. They are only a few of the carefully labelled contraptions the educational councils and special assistance boards and special access groups lent us—
lent
us! Expecting us to wash them and give them back when the problem was solved! As if the problem would one day be solved. As if when that day came we would be able to find them again in the avalanche of toys we lived under, figure out which of a dozen agencies they had come from, and where that agency was now, wash them up and then load them into the car—maybe Walker would come along—and drive them back! Lovely dream. I wish it worked that way, my God more than anyone I wish it worked that way.

Instead, the yellow buckets live in the unused sauna, make me feel guilty to this day, one more task I have not had time to accomplish. There was a clearly delineated system designed to teach skills to Walker. Acuity of vision! Gross motor skills! Hand–sound associations! The ability to stick his finger in a goddamn hole! Why could I not hew to the system? Surely other parents did—that’s why the system was designed the way it was. So I was once convinced, in any event.

Never mind that the system never taught the boy anything.

The most mysterious of the loaned and purloined devices is the red and white triangular box. This contraption has a tape-laminated label too:

TOYS FOR SPECIAL CHILDREN
PLASTIC PRISM
#5 Catalogued

The three long sides of the triangular box are red; the end caps are white. Four of the five sides are designed to stimulate The Child in a different way.

One side has a mirror—a mirror so scratched it resembles a patch of pavement, but a mirror nonetheless.

Another side has two buttons on either side of a light. The light is in the middle of a depressed circle.

A third side has another depression, in which there is a smiley face pattern in tiny red lights; below the face there is a wooden roller that does not roll, but that clicks when pushed.

Finally, on the bottom of the contraption is a string that once upon a time lit up the face lights. In my experience the lights never worked, but that is the theory. The theory is that if The Child pulls the string, the face lights go on, whereupon The Child will be stimulated to move his or her hand toward the roller below the face, and the roller will make its little noise. The intention and theory of the device are represented by a formula:

string + lights = face recognition with voice/noise association

The purpose of the toy, then, was to teach Walker to associate faces with voices, to pattern into his mind the concept that a face and a voice might be related. At least that is my best guess. I tried to call the manufacturer, to learn just what the device was supposed to teach my boy, who sometimes smiles at me when I put my face next to his and call his name, but the manufacturer’s name is not on the toy. Perhaps this would have been too distracting.

I still remember the day, back when Walker was an infant, when my wife came up with the idea of storing a toy basket on every floor of the house. I thought it was a stroke of genius; I thought we had the problem licked. But all these years later they’re still there, stuck and full, as we often are.

three

What irritated Dr. Norman Saunders, Walker’s pediatrician, was that the hospital hadn’t called him soon enough after Johanna delivered an obviously troubled baby five weeks early. Certainly something seemed off that day. It was the twenty-third of June, 1996, a Sunday. I was at work, hosting a three-hour weekly public radio show. Johanna called me after the second hour: she was in labour. Her voice was only a notch off its usual calm. My brother drove her to the hospital, one that specialized in women’s health. I finished work, and met them there. Her own doctor was on holiday; the delivery would be supervised by one of her doctor’s partners, a tall mild man named Lake. Walker wasn’t his fault, of course, but I never forgave him anyway.

Something else was off that day, besides my wife’s regular doctor: the way the boy, the moment after he came out, slumped in the obstetrician’s hand. He wore a strange defeated look, as if he knew something was wrong. His skin was jaundiced. His lungs hadn’t opened well, and the interns whisked him off to a table, where for several minutes they pressed an oxygen mask to his tiny mouth and nose. For several years afterwards I wondered if forced oxygen had contributed to his delays—as it can. “Whew,” I heard the tall intern whisper to his colleagues a few moments later, “I’m glad he started breathing when he did.” That’s when the steady low-grade panic began, the worry that has marked Walker’s life since that day. The lurch of his life. The signs were there from the beginning. That strange flock of wild, curly hair, piled in a strip on top of his oblong head—an unexpected pattern. The other day I found myself riding my bicycle past the hospital where he was born and nearly spat at it. I hate the place, even the yellow bricks it’s made of. But, we reasoned, he was premature; naturally he was lethargic. (No one spots CFC at this stage.) He refused his mother’s breast on alternate feeds and one of his testicles hadn’t descended and he could open only one eye. Still, by the time he saw Dr. Saunders for his first checkup two days later, the kid had gained 300 grams.

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: specifically, 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.