I've got a photo on my desk, it's maybe 18 years old, and the "boy" in it is now 24. A lot has changed over the years, I've aged and he's grown up, but many things are the same. He still lives with us and will as long as we can care for him; he is still sweet, loving, and challenged.
Anyway, this is what I feel and remember every time I glance at the photo.
A small boy sits on a brown horse, wearing a white short-sleeved shirt and a black riding helmet. Sunlight streams into the barn through an open doorway highlighting the boy, the horse, and four young women against a black background. The boy’s face is half-hidden, but he is looking toward his right, downward, toward three women standing off to that side. One of them, a teenager really, loosely holds a lead rope attached to the horse’s bridle. The horse’s body is facing the camera, but its head is turned to the boy’s left, in the opposite direction that the boy is looking. The horse is nuzzling a fourth woman who stands close by, her hands on her hips, looking at the boy and horse, a white hairband shining like a halo in her dark hair.
The horse, too, nearly shines, his bridle sparkles silver, and sunlight glints off the boy’s helmet and the hair of three women. The woman facing the boy has her hair tucked beneath a red kerchief, her face and one arm bathed in sunlight that comes over the boy’s shoulder. That arm has one hand slightly raised, one finger pointing.
The horse’s name is Snuffy. Three of the women are volunteers at this equestrian therapy center, the other is the owner and one of the teachers. The boy is my son. He comes to this place once every week, where he spends an hour on horseback, developing coordination, muscle tone, and confidence.
My son's face is not clearly visible in the picture, but if you could see it, you would notice, want to or not, that it’s not quite right. The eyes are a little off, the mouth and nose too small. His skull fused while still in the womb, so that instead of having a soft spot, his growing brain pushed against the bone, trying desperately to find room, turning solid bone into nothing more than papery thin Swiss cheese. He was born with bulging eyes and a "conehead." He is better now, after major surgeries at three months, six months, and 18 months, all to open up, reconstruct, and brace the skull and pull the forehead forward. Three times we were led into pediatric ICU area, where we saw our little guy, ensnared in tubes and wires, the top of his head covered by pale yellow vinyl, like a puffy shower cap, his eyes swollen shut, immobilized by drugs and swaddling, his soft breathing accented by the quiet beep and whir of machinery.
He wouldn’t care if you noticed his face but, truth be told, I would be thrilled if he felt a bit self-conscious, even as I tried to reassure him. Because his deformed skull is not our little guy’s only birthright. If you were in the photo with him, and you looked him fully in the face, he would not look back at you. He never makes deliberate eye contact, and rarely talks in full sentences. He never plays with other children, other than his "neurotypical" twin sister.
My son is autistic, which means he is with us in his own way, on his own terms. On a very few levels he is like any other boy, busy with school, swimming, and playing (usually alone). He loves reading and slapstick humor. He’s great with numbers and calculations and abstract facts, and seems impervious to what other kids think of him. But he does have fears, wants, and needs, which he doesn’t express well or often; his laugh is infectious, and his tears, rare as they are, will tear your heart out because they are so honest. He has rarely lied to me, not because he is a saint, but because he finds it hard to picture or describe the world as other than it is. He seems without guile or guilt, likely because he can conceive of nothing else.
Back to the photo. These four women, like so many others -- therapists, teachers, doctors, relatives, babysitters, parents, and us -- have come together, been brought together by this guy. We all work to draw him out of his world and into ours. We give of ourselves to give him, this sweet little boy, an entrance to society. All as he, in his innocent way, is as naively accepting of all efforts as is the horse in the picture, taking some of what is offered, and, rarely (though more and more lately) reaching back out and letting the others in.
Every time I see the photo I am reminded that sometimes, even in an apparently random configuration of otherwise unrelated people and events, we can make a beautiful picture against an unknown and uncaring blackness.
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