A mother writes about her teenage son, afflicted with muscular dystrophy, and the life he leads, and the one he can look forward to

At the Center for Creative Photography, in Tucson, Arizona, my husband, Joe, and I are looking at prints of Moonrise, Hernandez, New Mexico, by Ansel Adams. A slender young man in a suit has brought us, as requested, three versions of this famous photograph. He dons a pair of white gloves before removing the 14 1/2" x 18 1/2" enlargements from their Plexiglas sheaths, opens the hinged glass viewing case in front of us, and places the photographs carefully, lovingly, on a slanted white board inside. He stands there while we examine the pictures; when we are finished, he will repeat the process in reverse.

I don't know exactly where Hernandez, New Mexico, is, but it reminds me a bit of Sacaton, ninety miles northwest of here, the Pima Indian village where Joe is a government doctor and where we have lived since July of 1983. Now it's December. We have made the trip to Tucson expressly to view the Ansel Adams photos, though we did not imagine that there would be so many prints from the same negative.

In Moonrise two thirds of the space is usurped by a rich black sky; a gibbous moon floats like a hot-air balloon in an otherworldly—and yet absolutely southwestern—landscape. A gauzy strip of low clouds or filtered light drifts along the horizon; distant mountains are lit by waning sun or rising moon. Only in the bottom third of the photo, among scrubby earth and sparsely scattered trees, does human settlement appear: a small collection of modest adobe houses and one larger adobe church. Around the edge of the village white crosses rise from the ground at many angles; at first glance they resemble clotheslines strung with sheets or socks, but on more-careful examination it is obvious that they mark graves.

The prints differ greatly in quality from the reproductions one usually sees, and also differ slightly from one another: here we see a more defined darkness, burnt in by the photographer, there a variation in exposure, a grainier texture. But that does not change the essential meaning of the photograph, a meaning one never forgets in the Southwest: Nature dominates. Human life is small, fragile, and finite. And yet, still, beautiful.

I. Falling, 1998

Iam at the Grand Union in Dobbs Ferry, New York, with my son Ansel, who is thirteen years old. It's raining. He begged to come, so I brought him, not really wanting to, because I had to bring his wheelchair, too: it weighs more than 200 pounds and isn't easy to maneuver into the minivan, even with the ramp. I have to wrestle the motorized chair until it faces forward and then, bending and squeezing into the narrow confines of the van, I have to fasten it to the floor with several clasps. By the time I have done this even once, I'm irritable. A trip to the supermarket means doing it twice and undoing it twice.

Anyway, we've finished our shopping, and we leave the supermarket. Ansel is in his chair, without his hooded yellow raincoat from L. L. Bean, because he has decided that at his age a raincoat is babyish, not cool. He's afraid people at school will laugh at him. Maybe this is true, I say, but I think it's stupid. Why get wet when you can stay dry? Needless to say, I lose this argument.

Before loading the groceries I open the van door so that Ansel can get in the front seat, where he always sits if Joe isn't with us. He parks his chair at a distance from the minivan, so that I'll have room for the ramp, and starts to rise, laboriously. No, "rise" sounds too easy, like smoke going up a flue, airy, like yeast bread rising in the oven. Ansel does not rise. He shifts sideways in the seat and pulls himself up heavily, propping his eighty pounds against the armrest for balance. He leans with his left arm, twists his right shoulder around to straighten up, and brings his hip and buttocks to a partly standing position. Actually he's sort of bent in half, with his hands still on the chair's joystick. There is a moment of imbalance. His feet are planted far apart, farther out than his hips, and he needs to bounce back and forth a few times to bring his feet together. Finally he's up. He begins walking toward the door in his waddling, tiptoe way. His spine is curved quite a bit from scoliosis, his stomach is forward, his hands are out at his sides chest-high, his fingers outstretched.

His balance is so tenuous that his five-year-old brother, Toby, can knock him down. Sometimes Ansel will bellow, "I'm tired of everyone always leaving things all over the floor! Don't they know I'll fall?" It's true that we're a little careless about this. But Ansel will trip over anything—an unevenness in the sidewalk, the dog's water dish, some bits of food on the floor, things expected and unexpected—and sometimes over nothing. Sooner or later he falls. It's part of the routine. And the older he gets, the more he falls.

Now, in the Grand Union parking lot, he falls. Who knows why—it could be the wet ground. He's in the skinny aisle of asphalt between our car and the one parked next to us. He falls, and it's pouring, and I'm still loading grocery bags into the back.

"Mom!" he calls at me, half barking, half crying. "I fell!" There's such anguish, such anger, in his voice when he falls, and such resignation. He never thinks I hear him.

And why am I suddenly so angry? Such terrible impatience rises in me now. Am I really such a witch, such a bad mother, that when I'm loading groceries and my son falls, I don't have the time or patience to cope? Why am I so angry?

"Wait a minute," I say. "I'll be there in a minute."

So he sits on the wet pavement between the cars. I know his sweatpants are at this moment soaking through. I can see that the wheelchair, waiting to be rolled up the ramp, needing to be pushed and yanked into position, is also getting wet. Its foamy-nylon seat will need drying out later.

A middle-aged blonde woman has wheeled her shopping cart into the lot and approaches us. "Can I help?"

No, you definitely cannot help, runs through my head. This is both true and self-righteous. Physically, the job is not meant for two; it's easier for me to do on my own. How would we two, and Ansel, even fit between the cars?

I grit my teeth and smile and say, "No, no thanks, really. I can do it." People always seem puzzled and upset when they see him fall. It's so sudden, an instant crumpling, without warning. They can't see the weakness, the steady deterioration of his pelvis. Maybe someone would fall this way if he'd been hit hard in the solar plexus; I don't know. But Ansel's feet give way for no apparent reason, and he's down.

The blonde woman has heard me, but she keeps standing there, her hands clamped around the handle of her cart, her eyes moving from Ansel to the grocery bags to me. I know she means to be helpful, and in a way I do want something from her—pity? an acknowledgment that I am more noble than she? But mostly I want her to go away. Don't look at me. Don't watch this.

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