But at night at home, he began leafing through textbooks on rare syndromes. He didn't like what he found - specifically, a research paper with pictures of children who looked almost exactly like Walker Brown. The anomaly was new and shockingly rare, a random genetic misfire variously called Shprintzen syndrome, velo-cardio-facial syndrome, and cardio-facio-cutaneous syndrome.
This was in the fall of 1996. Walker had all the signs. The potential consequences were more sobering: learning difficulties, hearing loss, intellectual impairment, language impairment. "Socialization skills may surpass intellectual skills," one researcher noted, rather gracefully. Ten per cent developed psychiatric disorders in the teen years.
That November, Dr. Saunders referred Walker's case to the genetics department at the Hospital for Sick Children. At home, what had begun as a normal concern for a preemie baby had mutated into a 24-hour state of turgid alarm. There was something wrong with our boy.
In February, geneticist Ron Davidson confirmed Dr. Saunders's inkling: Walker had cardio-facio-cutaneous syndrome. He was eight months old. That would qualify as an early CFC diagnosis even today.
"Now that we know what's wrong, we'll know what to put right," my wife said, touchingly. She believed in medicine.
Dr. Davidson was even upbeat. "His developmental milestones are being achieved at a rate that was well within the normal range," he wrote in a confirming letter after meeting Walker. (There were always confirming letters.) True, "the feature of the CFC syndrome that raises most concern is the chance of learning problems," but even here there was a light at the end of the tunnel. "As the number of cases reported has increased, several affected individuals have been reported as having completely normal learning histories and normal intelligence."
The syndrome was not hereditary: The chances of having a second CFC child were microscopic, although Walker had a 50-50 chance of having a CFCer of his own. "However, by then we will know a great deal more about the condition and the mutation that causes it, and there will undoubtedly be a variety of options available to him and his wife." Walker's wife! I have to say I never believed it.
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 ½.
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.
