J. Stands Up

John Singer Sargent, Studies of Clasped Hands for “Apollo and the Muses,“ 1916-21, charcoal on laid paper

 

My son, J., has many medical issues and severe cognitive disabilities. Yesterday, at one of the endless meetings we have about said disabilities, my husband and I were asked to describe how J. got that scar on his face. We shifted, almost in shame, as if it were someone’s fault. It wasn’t. So one of us explained how one day, J. was in so much pain from his gastroenteritis when he came home from school—this is our guess; he can’t communicate what he’s feeling, or what motivates him—and we weren’t able to get him his medical cannabis in time. He often bangs his head on things when he’s hurting. That day he happened to be standing by a window. He put his head right through it, slashing his face open on a jagged piece of glass.

The developmental psychologist then asked us if J.’s ever tried to hurt us “with malice.” My spouse and I considered. We have scars from J.’s bites everywhere—I have one on the web of my hand and another on my left breast, where he bit me in fear after seeing a dog while I was holding him. My spouse has his own scar on his face, for which he, the least vain person I know, is considering plastic surgery to have removed. It looks a bit like a pimple, makes it difficult to shave. And who wants to look at that every day? 

But both of us concluded, no. Our son has never harmed us with malice. “Just like he doesn’t lie,” I added, which made me think of other things: he still has unopened presents from his January birthday, because he isn’t materialistic. He’s on a very strict, hypoallergenic diet, yet he seems to find the simple food we prepare—fat mackerel filets, mounds of vegetables, cauliflower grated to look like rice—delicious. I used to think his flexibility with his food came from the fact that he doesn’t watch TV, unbombarded by ads for Froot Loops. But I don’t think that’s the case. He sees his classmates eat “fun” packaged foods, and at one of his former schools they used “treats” (e.g., Cheetos) in a Skinnerian scheme to coax out “appropriate” behaviors. But he’s never thrown a tantrum for Cheetos deficiency. His default setting is to live fully in the present. Back when he was feeling brain-sizzling pain and no one, to his mind, was helping him, being present meant he acted out the only way he knew how.

He is seventeen now. When he was twelve, if I heard him crying at night, I was scared to go into his room, because he’d charge at me in the dark and start attacking—hitting, biting, kicking—as if he was possessed. I learned to enter gingerly, holding a giant exercise ball in front of me like a gargantuan, green pregnant belly. Often, he’d run at me with such force that he’d bounce away, repelled off the ball. This would make me feel terrible, but at the same time I had to hold onto that airplane-crash pragmatism, how you have to adjust your own oxygen mask first before helping others, even—especially—your child. I was aware that if he broke my bones or knocked me out when I was home alone with him, we’d both be sunk.

“What kind of kid does this to a parent?” bystanders say in outrage, presumably taking “our” side. I have to admit I’ve thought this myself, especially through the period when J. would smear his shit stealthily, quietly, on his bedroom walls at night, so in the morning I’d come upon a room painted by an insane Basquiat.

*

This morning I got J. up for school. His issue now is nighttime urination. I’ve decided that seventeen is finally too old to wear diapers to bed—plus, they’re toxic. Instead, we wake him up throughout the night and lead him to the bathroom. He’s had a thrilling spate of dryness, so I know he can do it. How nice to take a Christmas vacation without having to load up on bales of adult diapers! But last week, perhaps because his dad was away, I awoke to find him day after day in a soaked bed, the urine penetrating the layers of pads I’d set down, reaching the latex and wool of his mattress.

The scrubbed mattress has to be turned on its side to dry. Last night J. slept—uncomplainingly, as always—on a kind of pallet I’d assembled on the floor. My husband and I had just watched a Korean movie, a documentary, wherein a ninety-six-year-old man still sleeps that way, without even a yo, a thin blanket between himself and the floor. From this I rationalized that it would be okay, if not culturally appropriate, for J. to sleep on the floor for a night or two, atop three layers of quilted, absorbable pads. And: yes! He is dry.

I praise him, extend my hand to him to help him up. I am shocked when he actually grasps it. For years, it’s seemed he has no understanding of reciprocity in relationships. He’ll turn off the lights when he leaves a room, stranding me in the dark. When I point to his reflection in the mirror, he focuses on my finger. Normally, he greets my outstretched arm by either patting my hand, as if I’m giving him a low-five, or by seemingly not understanding that my hand is there, for him, at all.

But this morning he grabs it: a firm, manly grasp. And as he pulls, I have to bend my knees and lean back mightily, as if I am hoisting a sail heavy with water. It occurs to me how much choreography this requires, the exquisite dance of bone and musculature contained in this simple upsa-daisy! move, the silent agreement between the two parties. And in this small moment—three seconds, max—I’m overwhelmed with awe, at how much it must have taken, the intelligence, the observation, for my son to have taught himself this.

Upsa-daisy!

Together, we rise.

 

Marie Myung-Ok Lee’s next novel is forthcoming with Simon & Schuster. She teaches fiction at Columbia, is a staff writer for The Millions, and has written fiction and nonfiction for The New York Times, The Atlantic, The Kenyon Review, Guernica, and The KGB Bar Lit Journal.

from The Paris Review http://ift.tt/2qjtfzu