Read excerpts from:
The Mechanics of Falling
Curled in the Bed of Love
- from End of the Class War
Lives of the Saints
Lying on the floor, Danny watches me lift his leg, massage the atrophied muscles in the circular motion that is supposed to enhance blood flow. I hum, the few lines I can remember from Bach’s Double Concerto, because the music turns the narrow corridor of these repetitive, aching minutes into something as vaulted and buttressed as a cathedral. From the kitchen Ian and Fiona offer a counterpoint, the clink of a spoon in a cereal bowl, Ian urging Fiona to hurry. At five, Fiona isn’t old enough to understand time, and she makes us late for school nearly every morning.
Danny already has a complex understanding of time. He loves the measured grace of Bach that tricks us both past the ache he feels in his hips when I work his lifeless legs. He watches me steadily, as steadily as I am hurting him.
Ian doesn’t change Danny’s catheter or work his atrophied muscles. This is my job, as it was my job to knit Danny whole when he was growing inside my body. He is still so small for his age, a bony bundle that I can easily lift from the van to the wheelchair. Ian and I have large wrists and knuckles, long legs, strong backs, ledged hips where Danny can still be propped like a baby, the least of weights, a tow-headed fairy, less dense than we are, more pure, so astonishing he makes me wonder at the mystery of his making.
Danny asks me if I know that spiders have knees. He coils and uncoils his fingers delicately to illustrate the jointed working of a spider’s legs.
“Do they move one leg at a time?” He’ll know the answer; he pays attention to tiny things.
He nods. Then he asks me when we won’t have to do this anymore.
He’s full of questions about the obvious lately, busy reconstructing the world according to reason rather than wishes. Why do I need to sleep? Why is Fiona a girl and I’m a boy?
I tell him that we’ll always have to do his physical therapy.
“But when I walk,” Danny says, “then I’ll be an airplane pilot.”
My fingers dig into the cup of Danny’s heel. He can’t feel it. We’ve all done such a good job of living around that basic fact, even Fiona, who fetches things for Danny with automatic willingness. But he has begun to compare himself to other kids for the first time. He boasts that he’s the best reader in his second-grade class; he notices that he can’t play baseball at recess. Ian went out and bought him a mitt, and now he plays catch with Danny in the backyard, where every time he can’t reach far enough for the ball Danny’s wishes collide with his newfound faith in practice.
“You know you can’t walk, honey.” I sit Danny up, ask him to tell me quick what he wants for breakfast.
Spina bifida means divided spine. That Danny could be born with his spinal cord exposed, an open wound in his back, seems as much a miracle to me as the perfect functioning of the secret coding that takes place in the womb, that forms the spinal cord from a trough and sheathes it with the vertebral column.
I pull up Danny’s elastic-waisted pants, work to get his shoes over his limp feet. Fiona cries in the kitchen. I can just pick Danny up and put him where I want him, but she will plop down on the front steps to protest the pressure of the clock. When I wheel Danny into his classroom, late again, his teacher will be understanding. She’s happy to have Danny in her class. It’s so good for the other children. They vie for the chance to stay inside with Danny instead of going out to the yard at recess. Next year, Danny will have to leave the school. The third-grade classrooms are on the second floor, and there’s no elevator, and Danny will grow too big for me to throw on my hip and cart up the stairs.
Two days after he was born, after a surgeon had closed the wound on Danny’s back, Danny’s wound became infected. The infection could have killed him. Ian and I stayed in the neonatal intensive care unit until the nurses sent us home at midnight to sleep. I was still grieving for the simple fact that I couldn’t hold my baby, couldn’t take him from the clear plastic incubator, could only reach through the armholes to stroke him. It seemed to me then that nothing would be wrong if I could have him in my arms, if Ian and I didn’t have to climb in the car and go home where Danny’s crib and the dressing table Ian had made for him were waiting. But that’s shock.
Somewhere on the way home in the dark, Ian pulled the car over to the side of the road and began to cry. To moan, to bring up air from deep within his chest. And I cried, “God, God, God,” just that name. I wasn’t asking for anything, just letting the rawness of that name push its way up my throat like a fist. I found God, in that growling right now, knew I would never ask why, never ask for this to be fixed or undone. A God who could answer such prayers would be too cruel.
We’ve been lucky. Danny’s wound was not high enough on his spine to cause hydrocephalus, though at first we had to make weekly visits to the pediatrician so she could wind a tape measure around Danny’s skull to check for swelling. Danny can’t walk, but he is otherwise perfect. Ian would be angry to hear me say that, perfect, but I don’t talk to Ian about this if I can help it, just as I don’t talk to him about God. For him, saying God is like saying shit or damn, a momentary bubble of rage or frustration. He thinks I’ve fallen back on the superstition of my Irish Catholic upbringing, or that it’s guilt that makes me seek the comfort of a mere presence.
I got pregnant with Fiona when Danny was eighteen months old. Ian wasn’t ready to go through another pregnancy. We’d been told the incidence of spina bifida births was higher among Irish women. He wanted the alpha-fetoprotein blood tests, the ultrasound, the amnio. I didn’t want to know, to choose. I wanted to be left alone to be greedily pleased by the butterfly flutters of life in my belly. Ian badgered me with what if each time we waited for the test results. When Fiona was born, the doctor freed her shoulders from the birth canal and let me pull her the rest of the way out of my body myself, let me hold her slickness against my newly slack belly. A miracle again, her wholeness, her health. Ian and I both cried to see her.
Story continues ….