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

“There is a school of painting called abstractionist or nonobjective,” he told Mrs. Davidson, “which is derived largely from the work of Paul Cézanne, that attempts to create ‘pure painting’—that is, an art which will use form, color and design for their own sakes, and independent of man’s experience of life and his association with nature. I do not believe such an aim can be achieved by a human being. Whether we wish it or not we are all bound to the earth with our experience of life and the reactions of the mind, heart, and eye, and our sensations, by no means, consist entirely of form, color and design. We would be leaving out a good deal that I consider worthwhile expressing in painting, and it cannot be expressed in literature.”
    The first time I read the passage that morning—it was still before breakfast—I thought, this is exactly my error with Walker. I’m trying to see in him things that aren’t there, events “independent of life and my association with nature.” We were the abstractionists where Walker was concerned, insisting there was a painting, a coherent idea, albeit in radical form, that no one else could see. I kept rereading the passage, and the more I read it, the more I began to think that there was very little difference between what Hopper tried to do on canvas or paper and what we tried to do on the blankness of Walker: we described what we saw, and then tried to determine what it meant, how it made us feel, and whether it was realistic.
    An hour can pass that way, triggered by the mere thought of him.

    At home on his neighbourhood tours with Olga, Walker had a vast circle of acquaintances. Strangers approach me even now and say, “You’re Walker’s dad.” It makes me feel his brilliance. He was well dressed too. Olga bought him the latest gear at Gap for his birthdays and I occasionally snuck out on my own to pick up something. I can’t describe the pleasure it gave me to buy his first big-boy shirt: he looked so sharp and cool. I bought him an orange skateboarder sweater, I bought him his first jeans, his first khakis, his first sneakers, his first baseball cap, a flight jacket with a fur collar, a T-shirt from wherever I travelled. I bought him an undershirt that was smaller than my hand, a pair of sunglasses he despised. Hat and gloves (all hurled aside with vigour), socks, beaded Indian belts. All the emblems of a normal boyhood. My longing, not his. One day I’m going to take him with my father and brother to buy his first tie. I know it’s futile: the bib he wears to catch his drool will cover it. But that might be the only male ritual we pass down to him.
    From a notebook I kept:
    27 December 1997. Have to pay more attention to Walker’s diet. He had a doctor’s appointment before we left for Christmas here in Pennsylvania, and our pediatrician was surprised that he still can’t or doesn’t walk, crawl, strive to pick up objects and stuff them in his mouth, feed himself, swallow anything with chunks in it, or stack blocks. He was even more appalled that Walker still weighs only 20 pounds—half or at best two-thirds of what he ought to at this age, a year-and-a-half. The new fear is that his inability to put on weight will affect his intellectual development, even such as it is. So I spent a fair bit of time trying to figure out how to make egg custard, which a nurse thought would put some meat on his bones. But he has a bad cold, and bad swallow control, which means that he throws up half the time after a meal. I can see a GI tube looming in his and my future. Mostly, though, I fear for his loneliness. Lately I’ve begun to think that he is aware of it too—suddenly aware that he is not like everyone else, albeit unconsciously.
    I seem to be on the verge of crying, so I will go .
    By the time Walker was three, his medical chart was ten pages long.
    A pattern of afflictions had emerged early: bad chest, pneumonia, constipation, endless earaches, scaling