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

money to be made from the garbage of the trauma of the body. The smells: antiseptic, coffee, puke, muffins, fresh linen, shit, worry, fear, grief. The last the worst: a dry smell, like stale ground, like hot pavement. And hand-washing, again and again, the splurt of the sanitizer, the Saran-Wrappy sound of a pair of hands spreading goo over themselves, the holy ritual of precaution. Choirs of crying. Clacking gurneys. Ambulance drivers making light banter with victims. Curtains hiding unknowable despair. The questions: Is it curable? Can they see my fear? And the inevitable comparison: Is my child better off than that child?
    Through it all, you hold your child’s body, hold its flesh and heat close to you, like a skin of fire, because you need to hang on to what life there is. The need to eat drives us, sex makes us shameless, but touch is our truest hunger. Just hang on. Just hang on. Just hang on. Just hang on.
    And gradually, without you noticing it, something changes, and you don’t have to hang on quite so tightly any more, or else there is nothing left to hang on to. The crisis passes or resolves. All of it incommunicable and yet, much later, impossible not to talk about ad nauseam.
    If you’re lucky they let you both go. The most liberating sensation of all, when you finally leave the hospital again in the early morning, before the sun is entirely up, the sidewalk still damp from the dew, your child safe again, for now. The way the world seems to start over. By the time you find your car—level two, near the north elevator—you’re making plans again.
    Throughout these years, on half-sleep, my wife and I fought a lot. Like most CFC parents, we argued more about sleep than about anything else: who had been able to sleep when and who hadn’t, who deserved to sleep in and who didn’t. It’s mostly the same argument. It goes like this: in the middle of the night, though it’s Johanna’s turn with Walker—and it could easily be the other way around—I can’t sleep and head downstairs to the living room to read. Five minutes in, I hear Johanna: “No, Walker, no!” A minute later, she appears at the foot of the stairs—naked, her skin still lightly tan (even in January), exhausted. Walker has been up for three hours and has just head-butted her and erupted with laughter. “Can you take him?”
    I sigh (a mistake) and say (another mistake), “I had him last night for three hours straight in the middle of the night.”
    “Forget it.” She stalks off. “Never mind! Sorry I asked!”
    I follow her upstairs, recanting.
    I pass her and get to Walker’s room first and lie down with him. By now my poor wife is so tired she refuses to let go. She shouts, I shout, I close the door. She comes in again, so I nudge her out, close the door again and bar it with my foot. I’m not exactly rational. When I open the door again, I can hear Hayley, in our bedroom (the endless game of musical beds, to accommodate the boy), asking what’s happening. I begin to apologize profusely to her mother. It’s not entirely sincere, but sometimes in these volatile battles it does the trick.
    But there are other times too—moments of unstoppable pleasure. The four of us in bed together on a Saturday morning, Walker on his knees, towering for once over us all. This is something, you see: every time he is happy, he is as happy as he has ever been. Hayley, a delicate and skilled ballet dancer, twisting with Walker to music on the stereo, Walker on the moon with joy. Minutes from his life. Everyday occurrences for a normal child. But I know their true value.

    Shortly before Walker turned two, we heard about a CFC study being conducted at the famous Children’s Hospital of Philadelphia. We drove ten hours to get there. At the end of a day of examinations we finally met a doctor who told us something we didn’t know. His name was Dr. Paul Wang, and he was a developmental pediatrician.
    Wang conducted a series of tests. He was a slim