The diagnosis was something to go on, but the knowledge didn't improve Walker's health. Dr. Saunders's notes became repetitive: congested and coughing and otitis andfailure 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.
The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.
I remember how proud I was the first day he went to school. Play and Learn was a daycare program that integrated normal and disabled children. You could spot the parents of the delayed: They were the ones who looked as if a bomb had just gone off in the back seat of the car. They were starved for contact and longing to tell the truth. One afternoon, I ran into a woman whose severely disabled 14-year-old daughter had died two years earlier. "Do you know the first thing I did - on the way back from the funeral?" she said. "I said to my husband, 'Pull over. Let's have sex.' " She later divorced him.
