I read five chapters of last night – a memoir by journalist Ian Brown about caring for his son Walker, who has a rare genetic condition. Walker, 13, can’t eat or speak, wears diapers, punches his head mercilessly and cries for no known reason for hours.
The book is exquisitely written – a labour of love. Brown describes the relentless physical care, sleep deprivation and inability to understand a child or soothe his pain that can bring parents to their knees. But he also describes the contradictions – the expansive moments of grace and love. “The strange thing was that all this darkness could be relieved by a few pinpoints of light,” Brown writes.
A smile; a “glee spree” when Walker explodes in laughter; their shared language of tongue clicks; or when the boy finally lets go, resting “calm as a pond” on his dad’s chest in the bath, or sinking into sleep against Brown’s body after hours of soothing. “Everyday occurrences for a normal child. But I know their true value," he writes.
I’m delighted to share with you the first chapter from The Boy in the Moon.
For the first eight years of Walker's life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.
The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.
Tonight I wake up in the dark to a steady, motorized noise. Something wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah.
But it's not the water heater. It's my boy, Walker, grunting as he punches himself in the head, again and again.
He has done this since before he was two. He was born with an impossibly rare genetic mutation, cardiofaciocutaneous syndrome, a technical name for a mash of symptoms. He is globally delayed and can't speak, so I never know what's wrong. No one does. There are just over a hundred people with CFC around the world. The disorder turns up randomly, a misfire that has no certain cause or roots; doctors call it an orphan syndrome because it seems to come from nowhere.
I count the grunts as I pad my way into his room: one a second. To get him to stop hitting himself, I have to lure him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me.
That sounds simple enough, doesn' t it? But with Walker, everything is complicated. Because of his syndrome, he can't eat solid food by mouth, or swallow easily. Because he can't eat, he takes in formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine–one thing, at least, is easy, under my control.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag. Close the mickey, rezip the sleeper. Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own.
This isn't a list of complaints. There's no point to complaining. As the mother of another CFC child once told me, "You do what you have to do." If anything, that's the easy part. The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his–a life lived in the twilight, and often in pain? What is the cost of his life to those around him? "We spend a million dollars to save them," a doctor said to me not long ago. "But then when they're discharged, we ignore them." We were sitting in her office, and she was crying. When I asked her why, she said "Because I see it all the time."
Sometimes watching Walker is like looking at the moon: you see the face of the man in the moon, yet you know there's actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me? All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own.
But there is another complication here. Before I can slip downstairs with Walker for a bottle, the bloom of his diaper pillows up around me. He's not toilet-trained. Without a new diaper, he won't fall back to sleep and stop smacking his head and ears. And so we detour from the routine of the feeding tube to the routine of the diaper.
I spin 180 degrees to the battered changing table, wondering, as I do every time, how this will work when he's twenty and I'm sixty. The trick is to pin his arms to keep him from whacking himself. But how do you change a 45-pound boy's brimming diaper while immobilizing both his hands so he doesn't bang his head or (even worse) reach down to scratch his tiny, plum-like but suddenly liberated backside, thereby smearing excrement everywhere? While at the same time immobilizing his feet, because ditto? You can't let your attention wander for a second. All this is done in the dark as well.
But I have my routine. I hold his left hand with my left hand, and tuck his right hand out of commission under my left armpit. I've done it so many times, it's like walking. I keep his heels out of the disaster zone by using my right elbow to stop his knees from bending, and do all the actual nasty business with my right hand. My wife, Johanna, can't manage this alone any longer and sometimes calls me to help her. I am never charming when she does.
And the change itself: a task to be approached with all the delicacy of a munitions expert in a Bond movie defusing an atomic device. The unfolding and positioning of a new nappy; the signature feel of the scratchy Velcro tabs on the soft paper of the nappy, the disbelief that it will ever hold; the immense, surging relief of finally refastening it–we made it! The world is safe again! The reinsertion of his legs into the sleeper.
Now we're ready to head downstairs to make the bottle.
Three flights, taking it in the knees, looking out the landing windows as we go. He's stirring, so I describe the night to him in a low voice. There's no moon tonight and it's damp for November.
In the kitchen, I perform the bottle ritual. The weightless plastic bottle (the third model we tried before we found one that worked, big enough for his not-so-fine motor skills yet light enough for him to hold), the economy-sized vat of Enfamil (whose bulk alone is discouraging, it implies so much), the tricky one-handed titrating of tiny tablespoonfuls of Pablum and oatmeal (he aspirates thin fluids; it took us months to find these exact manageable proportions that produced the exact manageable consistency. I have a head full of these numbers: dosages, warm-up times, the frequency of his bowel movements/scratchings/cries/naps). The nightly pang about the fine film of Pablum dust everywhere: Will we ever again have anything like an ordered life? The second pang, of shame, for having such thoughts in the first place. The rummage in the ever-full blue and white dish drainer (we're always washing something, a pipette or a syringe or a bottle or a medicine measuring cup) for a nipple (but the right nipple, one whose hole I have enlarged into an X, to let the thickened liquid out) and a plastic nipple cap. Pull the nipple into the cap, the satisfying pop as it slips into place. The gonad-shrinking microwave.
Back up three flights. He's still trying to smash his head. Why does he do it? Because he wants to talk, but can't? Because–this is my latest theory–he can't do what he can see other people doing? I'm sure he's aware of his own difference.
Cart him into the bed in his older sister Hayley's room on the third floor where I have been sleeping, so I can be near him. Hayley, meanwhile, is downstairs with her mother in our bedroom so they can get some sleep. We take turns like this, reduced by the boy to bedroom Bedouins. Neither Johanna nor I has slept two full nights in a row in eight years. We both work during the day. After the first six months, I stopped noticing how tired I was: my days and nights simply became more elastic and similar.
Lay him down on the bed. Oh, fuck me dead–forgot the pump! Build a wall of pillows around him so he doesn't escape or fall off the bed while I nip back into the other room. Remember 4 cc's (or is it 6?) of chloral hydrate, prescribed for sleep and to calm his self-mutilation. (I tried a dose once: the kick of a double martini. William S. Burroughs was thrown out of school as a kid for experimenting with it.) Reprogram the pump, restart the familiar mild repetitive whine, his night pulse.
At last I sink into bed beside him and pull the wriggling boy close. He begins to hit his head again, and because we know of no acceptable way to restrain him mechanically, I hold down his small right hand with my large right one. This brings his left hand up to his other ear–"he's a genius for finding ways to hurt himself," his teacher told me the other day. I grab his left in my left, which I have threaded behind his head. He begins to kick himself in the crotch with his right heel, so hard it makes me wince. I run my big leg over his little leg, and lay my right hand (holding his right hand) on his left thigh, to keep it still. He's stronger than he looks. Under his birdy limbs, he's granite. He'll mash his ears to a pulp if no one stops him.
There is a chance, of course, that none of this will work. Every once in a while, the chloral hydrate rebounds and transforms him into a giggling drunk. It's not unusual to have to perform the entire routine again an hour later. When he has a cold (eight, ten times a year), he coughs himself awake every twenty minutes. Sometimes he cries for hours for no reason. There are nights when nothing works, and nights when he is up and at it, laughing and playing and crawling all over me. I don't mind those nights, tired as I am: his sight is poor, but in the dark we're equal, and I know this makes him happy. In the night, there can be stretches when he is no different from any normal lively boy. It makes me almost cry to tell you that.
Tonight is a lucky night: I can feel him slip off after ten minutes. He stops grunting, strokes his bottle, turns his back and jams his bony little ass into my hip, a sure sign. He falls asleep.
I hurry after him. For all this nightly nightmare–the years of desperate worry and illness and chronic sleep deprivation, the havoc he has caused in our lives, threatening our marriage and our finances and our sanity–I long for the moment when he lets his crazy formless body fall asleep against me. For a short while, I feel like a regular little boy's father. Sometimes I think this is his gift to me–parcelled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy.
In the early years, after Walker was first diagnosed with CFC syndrome at the age of seven months, the estimated number of people who suffered from the syndrome changed every time we visited the doctor. The medical profession–at least the handful of doctors who studied cardiofaciocutaneous syndrome, or knew what it was–was learning about the syndrome as we did. The name itself was nothing more than an amalgam of the syndrome's most prominent symptoms: cardio, for ever-present murmurs and malformations and enlargements of the heart; facio, for the facial dysmorphia that was its signal characteristic, a prominent brow and down-sloping eyes; cutaneous, for its many skin irregularities. The first time a geneticist ever described the syndrome to me, he told me there were eight other children in the world with CFC. Eight: it wasn't possible. Surely we had been blasted out to an unknown galaxy.
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.
Excerpted from The Boy in the Moon by Ian Brown Copyright © 2009 by Ian Brown. Excerpted by permission of Random House Canada