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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.) Later, 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. He hated having his face touched, but loved his bath: The water seemed to ease his movements, float his knobby joints. 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 2 1/2.
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 laundry baskets of toys on every floor; plastic contraptions 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; vomit stains on everything.
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 would distract you, wipe the deck and throw his head back with pleasure, momentarily cleverer than anyone else.
He became a great wanderer, a lucky one. Once, when he was 5 (on his beefy days, he looked 3), I left him at the foot of some stairs in a friend's elegant house, while we ate dinner. I knew he couldn't climb stairs and I knew he couldn't open a door. Ten minutes later, I heard a tinkling sound. He had climbed the stairs, opened the door and was gleefully and deliberately smashing the last of seven wineglasses on their Noguchi coffee table. Not a scratch on him. We called that Kristallnacht.
He loved women, the prettier the better. 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, between the lines of a Norman Mailer essay read during a bout of insomnia.
He loved the outdoors. He spent hours with Olga, touring the neighbourhood in his stroller. He had a vast circle of acquaintances. Strangers approach me to this day 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 the 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's shirt — he looked so cool and sharp. I plan 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 among the four of us.
By the time Walker was 3, his medical chart was 10 pages long.
A pattern of afflictions emerged early: bad chest, pneumonia, constipation, endless ear aches, scaling skin. He didn't sleep. We thought of him as affable, but he cried half the time.
At least at the doctor's office you could ask questions. Returning home again was like entering a long hallway where the lights wouldn't go on. My wife said she felt "as if a soundproof curtain has dropped over us." Certainly any crisis with any child brings that curtain down: Your focus shortens, you aim straight ahead. The difference with Walker was that the curtain was permanent. Before Walker, the future had looked like a series of discrete challenges, each to be overcome with (possibly callow) glory. After Walker was born, the future was unchanging, sad, full of obligation, until we died, which only raised the gloomy prospect of what would happen to him then.
Early on — this too is common in the families of CFC children — we agreed Hayley shouldn't be held responsible for Walker as an adult. But she alone took him in her stride. One day, I asked her why she thought Walker couldn't walk and talk at the age of 2. "I could walk when I was 1, because I was born with two eyes open," she said. "But Walker was born with only one eye open." She was 4.
The diagnosis was something to go on, but the knowledge didn't improve Walker's health. Dr. Saunders's notes became repetitive: congested andcoughing and otitis and failure to thrive began to appear in every entry. At 18 months Walker spoke and understood no solid words, couldn't walk, had no gestures except "up" and the occasional smile. Saunders wrote DEVELOPMENTAL DELAY in capital letters on his chart. He ordered the installation of a G-tube — there wasn't time in the day to wait for Walker to take in the trickle of food he could swallow. Until he grew stronger, he wouldn't be able to eat; because he couldn't eat, he couldn't grow stronger.
The G-tube made it easier to administer the growing list of medicines Walker needed for his reflux and his ear infections and his sleeplessness and his jitters and his rashes: gentian violet, hydrocortisone, amoxicillin, azithromycin, clarithromycin, erythromycin (ever wider on the spectrum of antibiotic strength), cisipride, Keflex, Betnovate, flamazine, lactulose, colace, chloral hydrate. … They sounded like the names of ambassadors to an intergalactic conference of aliens. His already-chronic constipation (his muscles were too weak to move things along normally), made worse by the equally necessary chloral hydrate, often required not one but three drugs — lactulose as a sugary starter, colace as the dynamite, and suppositories, the blasting cap itself. You had five minutes to take cover.
Nothing was ordinary. Like most kids, he had diaper rash — but because this was Walker, my compromised son, it was the Chernobyl of diaper blights, requiring a day in hospital. There was so much wax in his ears that we could have started a museum. For a period of 10 months, he developed agonizing blisters on his feet that stymied his already stymied walking. They were three inches across, yellow, and showed up whether he was wearing socks or no socks, shoes or no shoes. They disappeared as quickly as they came. The doctors never did figure out why.
The diagnosis of CFC meant more appointments: the ear specialist, the eye doctor, the dermatologist, the gastro-reflux expert, the neurologist, a foot doctor, occupational and behavioural and oral therapists, the geneticist, the cardiologist, the feeding and sleep clinics, even the drooling clinic (their conclusion: "Mrs. Brown, your son drools"). The dentist needed full anesthesia to clean Walker's teeth.
Oral therapy was important if he was going to learn to speak, but two years yielded nothing. We switched to sign, but his fine motor skills were too coarse, the therapists said, and his head banging didn't help. Better to concentrate of his gross motor abilities, the experts told us. The eye doctor couldn't get an accurate reading on what his eyes needed, and Walker couldn't say. Ditto his hearing. All of this made me feel I had failed him. Added to the 11 times he was at Dr. Saunders' office in 1998 alone, along with trips to emergency, Walker logged a medical visit a week. And that was if he was more or less healthy.
To teach him to walk, we undertook a costly and radical Venezuelan therapy three times a week for two years. The Medek method entailed hanging him upside down and pulling his legs into unnatural positions. He started screaming the moment we pulled into the driveway, but he learned to walk. At least he had that. He could be what his name said he was. Maybe that was why we insisted.
Part 1 continued on Chapter 4…
