Beth Kephart

Nine years ago my husband and I became parents to the only child we'll ever have. Like all new parents we were changed forever -- by the innocence of our black-eyed son, by the touch of him. But my husband and I were also changed by the slow-dawning realization that our son was not quite like other children we encountered. Something was not altogether okay, and when, at the age of two-and-a-half, he was diagnosed with pervasive developmental disorder not otherwise specified, my husband and I understood only that we needed to find ways of entering his world so that he could finally enter ours.

These last several years have sent us through every conceivable emotion. We have learned to take nothing at face value, to question medical labels, to redefine normal, to seek out small kindnesses, to refuse to give up hope. Most of all, we have learned how enormously capable our son is, how much a gift he has been in our lives, how deep a contribution he can and already is making to the world. A Slant of Sun: One Child's Courage is Jeremy's story, an attempt at crafting prose that is adequate to the generosity of his spirit.

They come from opposite directions -- the girl and the boy in their chairs. Her gold hair susurrates around her face. His eyes, two pools of dark liquid, are as huge and as gentle as a fawn's. Their skin is the same unnamable aspect of white, and everything is loose and fragile about them but their hands, their fingers, which cling to the controls of their chairs and propel their bodies across the stage. It is enough for us that these children have appeared, but now they begin to dance, whirring in and out of each others' paths like bright tropical birds. I need both of my eyes to see this, and I bring my hand to my lap, but still it is a mystery, it is beyond human, how these two children in their crumple of bones glide and glide, and circle each other and spin, their wheels making no noises as they turn, their faces shy, soft as feathers, and triumphant.

We do not speak to one another. We do not lean over and say, But they are tiny. But they are fragile. We only watch them, and now we lift our eyes and watch the twenty who stand behind the two children on wheels, the twenty, Jeremy among them, who are upright as props and smiling, beaming, proud of all they can do, of who they can be on that stage -- despite genetics, despite diagnoses, despite haphazard labels, despite whatever legacies their swaying shoulders bear. We, here in our plastic chairs, cannot reach out and we cannot touch; it is impossible to hold onto this beauty. We are forced to sit and to see that life is sacred and secret, and we are forced to understand these things without the tendril of touch or the logic of words. We are elevated to the courage of mothers and of fathers, to the courage of children everywhere.

- from A Slant of Sun: One Child's Courage, 1998