A note on believing, against all sense and reason.
My six-year-old son and I share a nightly ritual, just the two of us alone in the fading light of his bedroom. Matty, who is severely mentally retarded, loves routine because life comes at him as if blasted from a water cannon, the millions of sights and sounds we all unconsciously assimilate every second of every day an undecipherable roar. Even more than most children, Matthew craves the safety that comes from learning the rhythms of his life, thrives on repetition. And of all his daily routines, winding down to bedtime might be the best. For a few minutes every night, I can turn down the white noise for him and help him ease into the peaceful joy of drifting off to sleep. We start out sitting on the floor with his favorite board book about monkeys drumming on drums, dumditty, dumditty, dum, dum, dum…The book is worn with love, all four corners gnawed off — Matthew chews up books the way other kids do grilled-cheese sandwiches, starting at the corners and working his way to the center. As we reach the last dumditty on the last page, he lets out a sigh that tells me everything’s right in his world and he’s looking forward to climbing into bed.
I rise to my feet and begin singing, Lord, I lift your name on high...as I reach down to help him into bed. He’s unable to walk on his own but he can aim himself in the general direction of the bed. He knows where this is heading and he’s ready for it. He pauses at the bedside to feel the blankets and pillow for a moment as if to make sure the bed is still stationary. Legally blind in one eye, he’s learned that things have a disturbing way of disappearing right when you’re ready to lean on them. But, as always, he finds the cool sheets safe, slings a skinny leg over the bed, and hauls himself up on top, moving rapidly before the bed can escape. He lies on his back rocking back and forth in bed, body rigid, a crease-eyed smile lighting his face, letting out an ecstatic aaahh.
I turn out the light and kneel beside his bed in the dark room, still singing, you came from heaven to earth...
Matty holds his arm out in my direction, a tentative groping for me in the sudden blackness. I wrap his hand in mine and press it to my face. I start singing the next song in our nightly rotation as I brush his hand against my whiskers, first his palm and then the back of his hand. He explores my face with his fingertips and then he covers my mouth gently. I sing into his palm, imagining the reverberations vibrating down into his little soul. How does he experience me? What am I in his world? I don’t know. I may never know.
Who will care for Matty when I am gone? Who will keep him safe? Or maybe I’ll outlive him. Many children like Matthew don’t live out a normal life span. Would it be better if he went first? As is often the case with Matty, I don’t have the answers. What I do have, though, is this moment in the dark with him, his soft hand gently brushing my lips, the source of the soothing song, the same song he’s heard nearly every night of his six years on the planet. Those hazel eyes of his which so seldom look into mine are easing shut.
Who am I, Lord, that you should know my name?
I finish the song and stand up and wonder what heaven will be for my son. Maybe it’ll be a place a lot like here, a place where his own son will run from him across a wide open field of green, every nerve-end in his little body singing, where afterwards, Matty and I can tip back a beer together at a pub. Where he has a healthy body and a lovely wife and our family can linger long over pasta and homemade bread and salad and red wine. Where his son, my grandson, will fall asleep in my lap, a sweaty load of spent boy pinning me to my chair on the deck, the night sounds stirring around us, the stars rioting in the dark sky.
I look down on Matty’s peaceful sleeping face. So often peace has eluded him: the operations, the I.V.s, the straps tying his hands to the hospital bed rails so he wouldn’t pull the needles out, the countless blood draws when they couldn’t find the vein, all the insults descending out of the blue onto my little boy who couldn’t understand why the people around him had suddenly begun torturing him. But he is at peace right now. And a time is coming when he will have peace and have it to the full. And all the other things he’s been robbed of. Meeting a girl. Playing catch with his father and his son. Making love. Calling his mother’s name aloud. Talking with his twin sister. Eating a pizza. Drinking a beer. Running. And I’ll get to be there with him. God will carve out a little slice of eternity for us, our own private do-over where the breeze carries the smell of fresh-cut grass, where the sky is bluer than you ever thought it could be, where the air feels newborn.
Soon, Matty. Soon.
Bruce Lawrie (firstname.lastname@example.org) is a writer in Scotts Valley, California. See beautiful-catastrophe.com.