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

going there, and that God had already decorated her part of it, as he did for each of his faithful, according to her personal tastes. “My heaven will be full of water,” she said matter-of-factly, as if she were describing her favourite resort. “Because I love water.” Coarse speculation, but how was she any different from Johanna and me? Who doesn’t want to believe there’s a heaven? But that doesn’t mean it exists.
    And yet this constant questioning, filtered through Walker—does he mean what he’s doing, or not?—was also a model, a frame on which to hang the human world, a way of living.
    The summer Walker turned twelve, we took our first long holiday without him. It was the same summer he learned to respond most of the time to a request for a high-five. While Walker was in Toronto at a respite camp, Johanna, Hayley and I took a week away at my brother Tim’s house in the town of Rockport, on Cape Ann, north of Boston. Tim and I had spent our summers in the town as boys, with our parents and sisters; we learned to swim there and sail, to eat a lobster properly, to take pleasure in the feel of the sea. We became independent there, and friends.
    The house was on the ocean, a square, immaculate dwelling that looked out over the Atlantic onto Thacher Island, a shoal so dangerous it sported not one but two lighthouses. It’s one of my favourite places on earth, and it always makes me think of Walker: he had been with us the first summer we stayed there, before Tim owned it, the first summer he and I rented the house together. Walker was born in June, five weeks premature, but we drove to Boston in August anyway, Walker barely six weeks old, back before we knew something was wrong, when he just seemed like a difficult kid to feed. We thought we could manage anything then. For two weeks my wife sat in a chair in the kitchen of the rented house by the sea, trying to express fluids into our weird little son while gazing out at the twin beacons.
    The chair had green cushions and bamboo arms. I looked at it so often that first summer of his life I made a water-colour of it, a painting my wife later framed and hung on the wall of our bedroom, near my side of the bed. For a long time it was the first thing I saw when I woke up in the morning. She meant it as a compliment, but I couldn’t help but wonder if it wasn’t an admonishment: don’t forget about the boy.
    Now he was twelve; we were back by the sea, our first time without him. The chair was gone too. The first morning I woke up before anyone else and climbed down over the granite rocks to the ocean for a swim, naked. The ocean was rough and it was hard to get into the water, and hard to get out again. Afterwards I made my way back to the outdoor shower and rinsed away the salt and got dressed and made coffee and read the paper and looked at the sea. I was by myself. It felt like paradise. I didn’t even think of the hours I had spent in that room with the boy, twelve years earlier. I am glad there is still a place, a sanctuary of sorts, where my concern for him cannot reach me, where I can forget him at least momentarily. But I always miss him when this happens, and he always gets there, as he has now in my memory of that kitchen by the sea. Such a luxury, the luxury of no concerns! Of not having Walker on or in or under my mind! Without him, for a short stretch I could do everything as I once did it, in deliberate steps, the way you can when you don’t have a handicapped child.
    But even there Walker found me. That morning, * having returned from my swim in the sea, wandering through the house, I began leafing through a catalogue raisonné from an exhibition of Edward Hopper’s paintings. Hopper had lived down the road in Gloucester, had created some of his most famous pictures from the grave and uncompromising local light. In 1947, Mrs. Frank B. Davidson asked Hopper what he thought of abstract art. The great representationalist wasn’t impressed.