The Boy in the Moon: A Father's Search for His Disabled Son Read Online Free PDF Page B

someone would be specific, and specifically helpful, but the only thing geneticists seemed sure about was how little they knew.

    By the late fall of 1996, from what Norman Saunders could see, Walker had nearly all the signs of CFC. The potential consequences were sobering: learning difficulties, hearing loss, intellectual impairment, language impairment. “Socialization skills may surpass intellectual skills,” one researcher noted, rather gracefully. Ten percent developed psychiatric disorders in the teen years.
    That November, 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 twenty-four-hour state of turgid alarm. There was something wrong with our boy.
    Any parent of a child with a syndrome remembers the day he or she is told to see the genetics department. It is the second circle of diagnostic hell. What has been, to that point, a matter of health, something you could fix, is suddenly a matter of science, carved in genetic stone. I still remember the way that day closed in, the way time gelled, went still. There had been an accident miles earlier on the divided-cell highway; we had to go back. The shock was similar to that of losing one’s wedding ring in the sea: you knew it was gone, it was unrecoverable. This wasn’t something we could fix, it felt ancient, primordial. One day Walker was part of life, the next he was a misstep of evolution. I hated the idea, but I now understood fate, what the Greeks talked about. Suddenly, nothing seemed to move much, and I felt a decade older.
    The building that housed the genetics clinic at the Hospital for Sick Children resembled a futuristic spaceship: stainless steel, clean, no nicks or flaws. Normally, the clinics and emergency departments and institutes and programs we visited with Walker were tiny madhouses—chaos, children crying in several registers at once. Mothers tearing their hair out. Social workers with clipboards. Doctors, the male ones, anyway, trying ever so delicately to avoid the fray. Machines beeping: I once counted ten different tones of ping .
    The genetics clinic, on the other hand, was like the sperm factory in Woody Allen’s Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) : clean, pristine, well ordered, neat. Nothing out of place. And quiet! No wonder: there were never any people around. It felt like a department where certainty reigned, where you might get a few answers. (Little did I know. To this day, despite repeated genetic testing, we have no confirmed genetic diagnosis of Walker’s CFC, even though his doctors are convinced that is what he has.)
    Saunders referred us to Genetics in November; the request wound its way through the medical system, and by February we had an appointment. The geneticist’s name was Dr. Ron Davidson; his son was a geneticist too. He was a tall man with a confident voice, and he confirmed Saunders’ inkling: Walker had cardiofaciocutaneous syndrome. He was eight months old. That qualifies as an early CFC diagnosis even today.
    “Now that we know what’s wrong, we’ll know what to put right,” Johanna said, touchingly, as we sat in Dr. Davidson’s office. She believed in medicine. She had wanted to be a doctor, had been a pre-med student for a year, before physics and organic chemistry finished those aspirations off.
    The doctor was upbeat. “His developmental milestones are being achieved at a rate that is well within the normal range,” he wrote in a confirming letter after meeting Walker. (There were always confirming letters, following doctor’s visits. We have rafts of them.) True, “the feature of the CFC syndrome that raises most concern is the chance of learning problems,” but even here there was hope, in the doctor’s view. As the number of cases reported has increased, several affected individuals have been reported as having completely