The Boy in the Moon: A Father's Search for His Disabled Son (2 page)

But within a year, after our doctors had begun to sweep the medical literature for references to CFC, I was informed there were 20 cases, because more had turned up in Italy. Then there were 40. (The speed with which the number changed made me sneer at the doctors: they were trained medical professionals, surely they ought to know more than we did.) More than 100 cases of CFC have been reported since the syndrome was first described publicly in three people in 1979; some estimates are as high as 300. Everything about the syndrome was a mystery, an unknown. It was 1986 before it had a name. Symptoms ranged wildly in severity and kind. (Some researchers believe there may be thousands of people with CFC, but with symptoms so mild the condition has never been noticed.) Some CFC children hit themselves, though most didn’t. Some could speak or sign. All but a few were anywhere from mildly to severely retarded. Heart defects ranged from serious to unimportant. (Walker had a mild murmur.) Their skin was often sensitive to touch, to the point of agony. Like many CFC children, Walker couldn’t chew or swallow easily; he couldn’t speak; his vision and hearing were compromised (he had narrowed optic nerves, one more than the other, and skinny ear canals subject to incessant infection); he was thin and wobbly, “hypotonic” in the medical jargon.

Like virtually all CFC children, he had no eyebrows, sparse curly hair, a prominent brow, wide-set eyes, low-set ears and an often charming cocktail-party personality. The CFC features grew more noticeable, more “abnormal,” as he grew older. I assumed my little boy was an average example of the condition. It turned out I was wrong. It turned out the average didn’t exist—not here.

Nor did those conditions change. Today, at thirteen, mentally, developmentally—I’m terrified even to write these words—he’s somewhere between one and three years old. Physically, he’s better off than many CFC children (he doesn’t have frequent seizures, doesn’t have ulcerated intestines); cognitively, less so. He could live to middle age. Would that be good luck, or bad?

Minus a few new genetic details, this was and still is the sum total of what the medical profession knows about CFC. It isn’t widely studied, as autism is. Most parents of CFC children know more about the affliction than their pediatricians. The CFC population isn’t large and politically powerful like that of Down syndrome, which more than 350,000 people live with in North America, and which occurs once in every 800 births. CFC shows up no more often than once in every 300,000 births, and possibly as rarely as once in a million. The National Institutes of Health Office of Rare Diseases characterized CFC as “extremely rare,” way out at the far, thin end of the statistical branch, alongside bizarre genetic anomalies such as Chédiak–Higashi syndrome, a bleeding disorder caused by platelet dysfunction and white cell abnormalities. There were only two hundred known cases of Chédiak– Higashi, in part because so few born with it ever survived.

Raising Walker was like raising a question mark. I often wanted to tell someone the story, what the adventure felt and smelled and sounded like, what I noticed when I wasn’t running through darkness. But who could relate to such a human anomaly, to the rare and exotic corner of existence where we suddenly found ourselves? Eleven years would pass before I met anyone like him.

two

Early on I learned my son could lift my mood, that I responded to his unusual emotional valence. Many days, even now, follow a pattern:

I arrive home from work tired (possibly from being up with him the night before), even defeated: some ship has not only failed to come in, but turns out not to have sailed at all. The daylight is fading. Walker is playing with Olga, his nanny since he was born. Her last name is de Vera, but she’s always just Olga to us. If she hasn’t already returned with him from a three-hour walk outside (he loves the outside) and given him a bath, I can. I used to do it every other day, back when he was with us all the time. Bathing him brings me back to myself.

I run the bath; fetch him from Olga downstairs (he follows her steadily from the kitchen to the laundry in the basement back up to the kitchen, intermittently conducting self-guided tours of the living room, dining room, piano, front hall, and stairs of our narrow city house; for a long time, until he was six, the stairs were his favourite lounging space); ea ger ly unburden him of his clothes (the buttons, the zips, the geometry problem of extracting his stiff arms from his sleeves, keeping him on his feet, preventing him from slumping to the ground while I am upside down undoing his shoes, wishing we had bought the Velcro model instead of the laceups); ditch his diaper and perform cleanup if called for. Done. Lift him into the bath, watch him like traffic so he doesn’t submerge while I undress in an instant, jump in with him.

Then: we recline in the tub, the smooth of his naked back against my chest. He is as calm as a pond. His nipples are minute, literally the size of rivets. They make me nervous, I don’t know why. (I can only imagine.) His shoulder blades and the bones of his back are oddly soft, plastic, bendable, as if covered by some miracle upholstery. The skin of his arms and thighs feels almost manufactured too, too much matte and not enough flow, the cells rampaging, overbuilding, one of the more direct results of the genetic miscues that made him this way.

His body changes so slowly I often forget how much it
has
changed. The older he gets, the more noticeable are his deformities—they warned us about that, back when he was a baby. He has a small pot-belly now, which he never did before. When he was younger he was nothing but rope, whereas now around his middle, there is a quarter-inch pinch of flesh, like a roll in a sock. His skin is actually softer than when he was a baby, as if time were running in reverse.

At first, when he was an infant, baths upset him. But if you got the temperature right and sat quietly with him for long enough, slowly replacing the cooling water with hot, he calmed down long enough to enjoy it, briefly, until you rinsed his hair or delivered a new shocking sensation to his exterior: CFCers hate new stimuli, their nerves seem to be permanently scalded. Over time, he grew to like the bathwater; it seemed to free his all-too-loosely-linked limbs, lighten the load gravity imposed on them. The irony was that water had been one of his original nemeses: too much amniotic fluid in the womb, some of it aspirated before birth; also too much fluid in the brain, filling his overlarge cerebellar cavities.

He laughs more when he’s in the bath. Of course I like to think he laughs because he’s with me, but that’s absurd. He’ll laugh with almost anyone.

Another day. This morning we’re up before breakfast, while everyone else sleeps. We’ve started to let him get up when he wants to, to give him the illusion of choosing. Walker and I are in the kitchen, and I am making my daily inventory of his body: his ears (he has cauliflower ears from hitting himself, prone to constant infection), his nose (don’t ask), his general well-being. He’s playing with a Baggie filled with pop-can tabs. Olga saves them. I don’t know why she saves them but there are hundreds of pop-can tabs, secured and wrapped and secreted around the house—awaiting some strange catastrophe for which Olga endlessly prepares.

Maybe the catastrophe of her eventual absence? Olga saved our lives. She had been looking after the dying mother of a prominent capitalist when we found her through the Filipino nanny mafia. Hayley was a year old. Olga had worked around the world as a caregiver and a maid, after being forced to leave nursing college in Manila to provide for her family. When Walker appeared two years later, trouble from day one, Olga enveloped him. He was a shorter version of her: compact, intent, difficult to distract. She washed his clothes and kept his room and managed his meds and fed and changed and walked him for hours on end and sang him to sleep; and if she didn’t, she helped us do it. She did laundry the way pilgrims perform religious rituals, precisely and at least twice a day. Only at night and in the morning and on weekends, when she went home, did the house feel less secure: we were on our own again, Olgaless. Nothing fazed Olga—not screaming nor illness nor filth nor disaster. She wrote down everything Walker-related—number and nature of bowel movements, duration of walks, his mood, medicines and dosages four times a day, spells and fits, the odd proverb, our various whereabouts—in a coiled notebook she kept on the microwave:

Nov. 19 A.M
.
Walker Brown
10:30-chloral
11:00-Peptamol/Claritin/Risperidone
Poo=Yes=M=Reg
Bath=Yes

If she wasn’t looking after Walker, she rubbed Hayley’s back and feet. Hayley called her “Olgs.” She had no special qualifications to look after a boy as complex as Walker—beyond endless patience, an imagination, an eccentric sense of humour, cast-iron reliability, a love of the cellphone and a massive heart that did not distinguish between the needs of one person and the next. On the rare occasions Walker fell asleep, she devoured every newspaper in the house at the kitchen table. She was my age, exactly. Every couple of months she and forty Filipina girlfriends would stack themselves into a package-tour bus and drive to Orlando or Las Vegas or Chicago or New York or Atlantic City and back, in five days. After that, maybe even Walker was a vacation.

The Baggie full of pop-can tabs that Walker is mauling is metallic pulp: he pulls it and grasps it and flattens it, working it continuously between his flank-steak hands like a robot’s rosary, a thing to calm the future. Like something out of
Blade Runner
. I don’t know why he does it, what it means to him; I have to be content instead with the only certainty I have, which is that he likes to touch the bag, a lot. This is one unusual thing about having a boy like Walker: he has his own life, his own secret world, always has. It gives him a grave, adult air, even as a boy. He has things to do, objects to press.

Is it the sharp tabs under the softness of the plastic bag—two equal and opposite feelings at the same time? Maybe a plastic bag filled with pop-can tabs is Walker’s version of negative capability, the objective correlative of Keats’s ideal of equal and opposite notions held in the mind at the same time without having a nervous breakdown, without choosing one over the other. An idea reduced to something physical. Or maybe I’m reaching. He gives me no choice but to reach this way. He and I invent our world together every moment I am with him.
How are you, Walkie
?
What are you doing
?
Ah, you’re banging the bag of pop-can tabs, trying to find some music somewhere. Is that it?

There are worse ways to pass time.

Everything about him compels me, unless it terrifies me, and sometimes it does both. Today, up in his room, before we clump downstairs one step at a time, hand on the banister—he always leads with his left foot—we have a pillow fight. It lasts twenty minutes, longer than I’ve ever known his enthusiasm to endure. For the first time in ten years, I discover that he loves to be batted with a pillow. Astonishment—how did I miss this?—pleasure, a little boredom when it drags on too long, but (overall) happiness because he is happy. Before the chloral hydrate seeped into his system, while he was still standing beside his bed trying to defecate (his morning chore, right out of bed, whammo!), his defecation look on his impassive face (and the act does have its own look), he was cranky and upset, rasping his fingers at the site of his G-tube as if it were an open-pit mine. Not breaking the skin; just abrading it, minor stuff by Walker’s self-punishing standards. The skin was white, chafed. I imagine it was painful, though he seems not to feel pain much, another sign of his syndrome. In any event, I love to come down the stairs with him. It feels like progress. I hate his room, that forgotten lair on the third floor. I hate the wall-to-wall sky blue carpet, and the Babar posters (which never change, like him), and the crick-crack wooden craft-show belt rack that’s always falling apart (he’s never owned a belt that has fit him, that was small enough for the tiny waist above the long-limbed legs). The multiple chests of drawers (unmatched, wicker versus IKEA) packed with clothes we can’t bring ourselves to throw away; the $10,000 veil bed hulking against one wall like an altar, encased in a tent of mesh, to prevent him escaping; the $1,200 stainless-steel IV tree standing in the corner of the room like neglected Uncle Bertie (but which we can’t throw away, in case an emergency arises, in case we need it again: Christ, what if we need it again?); the rocking chair my mother gave me as a boy, now broken, one of her few connections to my son. And of course Clarence the Clown, the nightmarish plastic clown’s head that comes apart in slices, the eyes, the nose, the mouth, while Clarence talks to you, letting you rearrange his face, sad, happy, Cubist, terrorist. Is that telling—that a toy whose face he can rearrange and distort should be my dysmorphic boy’s favourite? Or is the appeal that he can turn the electronic voice on and off, unlike his own? You tell me. I hate his room because it feels like an out-of-date museum, a place that, like my son, rarely progresses.

He has the body of an old boxer: square, really, like a shirt box on end. His arm cans—rigid fabric tubes that prevent him from bending his elbows, so he can’t deliver smashing upper cuts to his skull all day long—prevent him from developing big biceps, but he has tough lumps of muscle on his forearms. His face is heavy in the lower jaw, full in the cheeks: he has no chin to speak of. Curly hair, but no eyebrows, where he’s as bald as a spaceman. A wide nose, characteristic of this syndrome (and of many others, too). Thick lips, especially the lower one, “patulous,” the doctors called it, back when he was still a novelty. Square teeth, yellowed from the formula, but undecayed. Hands like gloves, huge for his size. The helmet he wears more and more of the time now is royal blue, a polished slippery foam—the blows glance off it. It came with a rainbow-coloured strap, someone else’s gesture at inclusiveness. (Is Walker as strange to the outside world as a transgendered person? I sometimes wonder.) He can hurt himself and others swinging his arms, butting with his head; he even hits Ginny, our border terrier, unintentionally. She doesn’t hold it against him. I, too, always give Walker the benefit of the doubt.

There are now two and three-quarter rooms in the house dedicated to his belongings. He expanded his domain gradually, but his empire is still the same size today, three years after he moved out, at the age of eleven, to the group home. He spends a week and a half there and then three days at home, but we keep our version of Walker’s world intact. Because of course we can never let him leave us, even if he wants to. There’s an entire room on the third floor, next to his bedroom, dedicated to the storage of toys he’s never played with and clothes he’s never worn—the archaeological history of our futile belief that this or that plaything would pull him out of his closed-off world, into our own more public space. They rarely did.

There are drawers of clothes Walker was given by outsiders as presents—clothes that required too much threading or buttoning, clothes made of the wrong fabrics for his ultrasensitive skin, decent intentions that had flummoxed dozens of people as they racked their brains wondering what on earth they could buy our strange and limited boy. The dinosaur castle that cost a hundred dollars and occupies him for five minutes a month, if he’s up here within sight of it. Mr. Wonderful, the doll that when you press its stomach says all the right things: “Honey, why don’t you take the remote. As long as I’m with you, I don’t care what we watch.” That held his focus for fifteen seconds. My wife, however, got a couple of laughs out of it.