Sam throws his head to the side and yells. He hates this wheelchair and he lets me know by banging his fist against his head and yelling until he makes himself hoarse. At age four he still does not talk. I push him down the narrow drugstore aisle, seven-month old Clara snugged to my hip in a sling, and call back to Jackson telling him to keep his hands in his pockets. The pharmacy has messed up Sam’s monthly Pediasure prescription again. It could have been the doctor or even the insurance company this time. All I know is that it wasn’t ready when I pulled up to the drive-thru window and I was told to come inside to sort things out.
There are three people in line ahead of me, two more seated waiting on prescriptions and a colorful display of candy eye-level to my six-year old that spans the entire pharmacy counter.
“Where are your hands?” I ask Jackson when I see him move toward the Kit Kats, Now and Laters, and the seventy- three varieties of gum.
He shoves his hands quickly into his pockets.
“My pockets are too tight,” he whines.
“You’ll get over it,” I say.
“My hands are too sweaty.”
“Dry them off inside your pockets.”
“You’re too mean!”
Clara sucks happily on her pacifier, dimpled cheeks moving in and out rhythmically, and leans down to grab a handful of her oldest brother’s brown hair. He turns to her. His hands come up near his face, curl into claws and he lets out a dino roar. She squeals with delight. The high pitch startles Sam; his eyes, blue and sightless, open wide. He yells out and beats at his head again. I lean over to hold the offending hand and see a young mom staring at us. Her hair is California blonde – bleached – and her tiny baby is in a car seat on the floor, flanked by the woman’s perfect pedicure and the dirty work boots of another customer. She looks intently at Sam, then to Jackson with his hair still clutched in his sister’s hand, and when she gets to Clara she sees me staring back at her. She looks down quickly at her baby drinking a bottle propped up by a blanket
What is this mom thinking? Is she counting her blessings that she only has one? Thankful that she didn’t get a baby as messed up as Sam? It’s possible she could be impressed by my mothering skills – simply in awe that I’m not fetal in the corner with all that’s on my plate. But I’m irritated that I’ve had to drag three kids into the store because someone screwed up the prescription for the umpteenth time, so I’m awash in piss and vinegar. And I know the question of what happened to Sam must have crossed her mind. The other two look so normal…what went wrong with him? It’s a question I get in some form on better days when I’m happy to entertain people’s curiosities.
Today I’m feeling mean so I say to her in my head, “He was perfect when he was born. Then one day, when he was about the size of your little one, I was exhausted having chased his brother around the house and up most the night with him. I just wanted some sleep. But, Sam, he was hungry. So I put him in his bouncy and propped his bottle up for him to drink while I rested my eyes for a few minutes. I know I shouldn’t have, but you know how long those days can be. Anyway, you would have thought I’d hear him choke, but no. Silent aspiration they call it. His brain was deprived oxygen just one minute too long the doctors say. Permanent brain damage.” Then I imagine that moment of satisfaction I would get as the realization sunk in that her child was just one inhalation away from being as fucked up as Sam.
The truth is I did everything right. I ate healthy, endured a horrible sinus infection because I didn’t want to take any medications that might harm the baby, avoided nail salons, stopped drinking coffee, had a natural childbirth and Sam still turned out this way. After he was born, and his disordered genes were revealed, we held him constantly, cradled him in our arms while he drank the milk that I pumped twelve times a day, slept with him at night, wore him in a carrier wherever we went and, while maybe these things helped his development, they certainly didn’t undo his disease.
And this mom? She regularly tends to her appearance but puts her newborn in a plastic contraption on the dirty floor of a drugstore, tosses a bottle of formula in with him and he’s fine.
Four years later. I’m still bitter.
published 26 May 2012