The Boy in the Moon: A Father's Search for His Disabled Son by Ian Brown Read Free Book Online Page A

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, resulting in (possibly callow) glory. After Walker was born, the future appeared 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 took him in her stride. One day, I asked her why she thought Walker couldn’t walk and talk at the age of two. “I could walk when I was one because I was born with two eyes open,” she said. “But Walker was born with only one eye open.” She was four.
    The CFC diagnosis was something to go on, but having a label still didn’t improve Walker’s health. Dr. Saunders’ notes became repetitive: congested and coughing and otitis and failure to thrive appeared in every entry. At eighteen months Walker neither spoke nor understood any words, couldn’t walk, had no gestures except raising his arms for “up” and the occasional smile. DEVELOPMENTAL DELAY, Saunders wrote, in capital letters on his chart. There wasn’t time in the day to wait for Walker to take in the trickle of food he could swallow, and Saunders ordered the installation of a G-tube. 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 inter-galactic conference of aliens. His 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 ten months, he developed agonizing blisters on his feet that thwarted his already thwarted 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 gastroreflux 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 (and I’m quite serious): “Mrs. Brown, your son drools.” The dentist needed to place Walker under full anaesthesia to clean his teeth. Oral therapy was important if he was going to learn to speak, but two years yielded nothing; we switched to sign language, but he wouldn’t make the eye contact essential to learn sign, and his fine motor skills were too coarse to do it anyway. By then he was beginning to bang his head