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

man with a high forehead and a quiet voice. He showed Walker some line drawings, a light, a puzzle; Walker threw them on the floor. After an hour, the doctor was done. Walker wandered over and climbed into my lap.
    “As you know,” Wang said, “there are three general levels of cognitive delay, or retardation—mild, moderate, and severe, sometimes called profound.”
    “Which one is Walker?” Johanna asked.
    “If Walker continues at his present rate of development, then he might be diagnosed with moderate mental retardation as an adult.”
    “Moderate?” Johanna said, and put her hand to her mouth. She was already crying. (I hope I held her other hand.) “I was hoping for mild. Will he ever be able to read? Or … drive a car?”
    “I doubt it.” This was bad news. Moderate retardation is still catastrophic, and there was nothing to say it wouldn’t get worse as he got older. He would need lifelong super vision, support in his living arrangements. “At this point, little definitive information is known about children with the CFC syndrome.” The doctor judged Walker’s overall development to be at the ten-month level. Ten months. Less than half his age. “As he gets older, of course, the differences will become more noticeable.”
    Wang turned to me. “Do you have any questions?”
    “Just one. We rented a cottage this summer for the first time, north of Toronto. It’s a very remote place, very quiet. An island, no one around but us. Walker seems to love it. It changes him, calms him. It means a lot to me, that place, and how it changes him. Will I ever be able to explain all that to him?”
    Wang shook his head. “Not rationally, probably not. But“—he stopped, thought—”it sounds like he already understands it.” Another pause. “The Buddhists say the way to enlightenment, to pure being, is by getting your mind out of the way. I’m not trying to be trite, but Walker already knows how to do that. He is pure being. He may be developmentally delayed, or moderately retarded, but in that way, he’s already miles ahead of most of us.”
    That was the first time someone suggested Walker had a gift the rest of us didn’t.
    Gradually, as the endless routine of caring for him and watching him and stopping him and stimulating him became familiar, my fear subsided, and my grief was transformed into an unusual loneliness. Life with him and life without him: both were unthinkable.
    As much as I tried to consider alternatives, I couldn’t imagine not caring for him every day: couldn’t imagine a day without the morning wake-up, the cleanup, the dressing, the school, the return home, the tired wailing, the sudden change and the bursts of sunny happiness, the feeding, the pointless teaching, the hilarity, the hospitals and doctors, the steady worry, the night rambles, all repeated every day until it ended, however that happened. There was nowhere we could afford to put him, and there was nowhere to put him anyway.
    Our friends offered to take him, to give us a weekend away. We did that twice in twelve years. Each time it was a different couple, our closest friends, a single night each time. They volunteered many times before we agreed: caring for Walker was a complicated thing to ask someone to do, after all, what with all the tubes and feedings and drugs, and the incessant hitting and crying. They wore one look on their faces when I dropped him off—attentive, but eager—and another thirty-six hours later when I picked him up, the look of someone who has just had 150 house-guests for the weekend, during which the entire plumbing system has exploded. I saw the same stunned gaze a few weeks ago on the passengers of a plane that crash-landed safely and miraculously on the Hudson River. Those were the looks our friends had after a weekend with Walker. I understand completely. But I will always be loyal to them because they tried—they tried to reach down into our darkness and hold us. I cannot tell you how