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

4 a.m., smoking and thinking the unthinkable. Criminal thoughts, or at least outlandish ones: what if we don’t take extraordinary measures? What if he gets sick and we don’t work so hard to get him better? Not murder, just nature. But even as I considered these grave plans, I knew I could never enact them. I’m not bragging; my hesitation wasn’t ethical or moral. It was a more medieval urge, instinctual and physical; fear of a particular mode of failure, fear of retribution if I ignored the dull call of his flesh and his body and his need.
    In any event I felt like an ox slipping into its yoke. I could feel the heavy tragic years coming on ahead of me, as certain as bad weather; there were nights when I even welcomed them. At last a fate I didn’t have to choose, a destiny I couldn’t avoid. There was a tiny prick of light in that thought, the relief of submitting to the unavoidable. Otherwise, they were the worst nights of my life. I can’t explain why I wouldn’t change them.

    Before Walker was born, after the birth of our first child, Hayley, my wife and I had the usual modern conversations about whether we could handle another. I loved Hayley, she was the best thing that ever happened to me, but I wasn’t sure we could afford a second child. I wanted Hayley to have allies in her future fights with us, even liked the idea of a larger family, but Johanna and I were both writers, and never had much money. I wanted some reassurance I would not have to give up my ambitions. A friend said, “Tell your wife you don’t want to be a stay-at-home dad,” which I did, to which Johanna said, “I know.” It was my porosity that worried me more, my susceptibility: I was a sucker for a point of view. And of course there was the immensity of the decision itself, to bring a child into the world—a major step in life that could end in failure or, worse, heartbreak. As a young single man, I had often seen married couples arguing in the street, or eating dinner together in restaurants, silent for half an hour at a time. Why do that? I thought to myself. Later, after I married, I saw couples harried by children, and wondered: why do that? And to see a couple with a handicapped child filled me with horror. Not the sight of the child, but the thought of the burden. I couldn’t imagine anything worse.
    The argument about a second child ended the way that argument often does: we let nature take its course and quickly produced a brother for Hayley. She was three when Walker was born. Some part of me wasn’t at all surprised that Walker was handicapped: he was my comeuppance, my education. From the first night I took him in my arms in bed to feed him, I could feel that chain between us, that chain that said we were linked, that I owed him.
    After Walker was born, I thought the conversation about more children might abate, but instead it intensified: now Johanna was driven by a new need, for a third child. She wanted to bracket Walker with normality. She wanted to insulate Hayley from the loneliness of being raised with a severely disabled brother, who would never be the company for her that a normal sister or brother might. But it was unthinkable and I was the one who said no. The guilt that came afterwards was as inevitable as the weather.

    Walker saw the doctor three more times that first month. He was puking like a pro; he never slept. His mother was a ghost. Dr. Saunders was now noting anatomical details every visit: oval, spade-like thumbs, mild blepharophimosis (smallish, down-slanted eyes), orbital hypertelorism (eyes widespread too). He always used the scientific terms on the boy’s chart—it made for more accurate communication with other doctors. They were serious words, embodying a professional standard of exactitude. But Walker Brown was a hard boy to be exact about. Both his testicles, on the other hand, were now palpable, a small victory.
    “It’s still too early to get worried,” Saunders told Johanna.
    He