Love Regardless
By Roberta F. King
I tried to pluck it from him because I thought it was one of my stray curly hairs. I seem to lose a lot of them and they appear on my dark clothing, on our black car seats, between book pages and occasionally in food I’ve cooked.
Just after a shower, Mike carried our fifteen-year-old son, Noah, who was swaddled in a big blue towel, from the shower chair in our bathroom to his bed, where I was waiting to put pajamas on him. I instinctively pulled on the hair down there. It was stuck.
“Ouch!” Noah said. The little blonde curly hair was his own, his first pube.
“Mike, come in here,” I called out to my husband. “You need to see this—Noah has a hair, several hairs, down there.”
Noah winced and blushed. “Mom, don’t…”
“I noticed it a while back,” Mike said as he entered the room.
“And you didn’t mention it, why?”
“I thought you already saw it. Saw them,” he said as he tried not to laugh. “Before too long he’ll have a pencil-thin moustache and a wife.”
“I’m cold,” Noah said, as he lay naked and still wet on the towel as we discussed facial hair and upcoming weddings.
When you dress and undress your child for years, you notice all sorts of things. Noah had a dark mole on his left butt cheek and for fun, we called him moldy butt. Sometimes when Mike carried him over his shoulder, like a bag of charcoal briquettes, from shower to bedroom, he’d stop, unveil Noah’s moldy butt, and I’d give it a gentle slap. Laughing, Noah would warn us, “Butt splash!” as if his butt was so wet it would splash water on our faces.
Most parents don’t have to bathe their kids or see them naked after they’re done with elementary school. But, kids with severe disabilities, especially those with mobility issues, rely on their parents or other people for personal care throughout their lives. Noah, because of his cerebral palsy was no different in the care he needed at three, ten or seventeen years old. Despite his disability, we never thought of him as helpless. He told us what he wanted and what he was thinking. He had opinions and ideas, but, without our help, he couldn’t execute his physical intentions. As his parents and caregivers, we were part of his private moments, as well as the everyday tasks that most people don’t think about.
Parents understand the organization needed to venture out with a baby. With a disabled child, the organization grows and becomes more complicated as the years pass. Kids become teens, get bigger, heavier and longer and often need help just as they did when younger. We became expert life planners. I’d always imagined that Mike and I were hippie-like people, free and easy-going, but the reality is, we might have been at one time, but by the time Noah was five, we were not. Our skill in being structured crept up on us, almost like the severity of Noah’s disability.
For normal sorts of activities, like going to Mass, we needed to structure in small, amounts of additional time. Noah needed to get into his jacket, settled into his wheelchair, out of the house, down the ramp, onto the van lift buckled and strapped into the van and then get the lift folded back into the van. At the church, we needed extra time to unbuckle and unstrap Noah’s wheelchair, lower the lift, remove Noah from the lift, fold the lift back up, roll into the church to find a pew with an empty space on the end so Noah could sit next to me, since church pews don’t quite accommodate wheelchairs. We needed extra space to turn him around to get to the back of the church and get up the aisle for communion.
We didn’t leave the house without a plan. Accessibility was always a concern—would there be steps? If so, how many? We could handle a few, but taking his chair up a flight or two wasn’t safe or easy, though we did it more than once. Before we chose a restaurant, we checked out the seating and the bathrooms—we needed a table, not a booth or a high top and a bathroom without barriers.
Part of the structure of our life was getting Noah up and moving in the morning. Sometimes, even when he was in high school we’d sneak into his room together, throw on the lights and sing, with motions, an old Girl Scout camp song: Way Up in the Sky. We sang the words loudly, startling Noah awake.
Way up in the sky,
the big birds fly,
while down in the nest the little birds rest.
With a wing on the left and a wing on the right,
the little birds sleep all through the night.
Shh, they’re sleeping.
The bright sun comes up,
the dew falls away,
Good morning! Good morning! the little birds say.
Every single day we dressed him—unless he was in wake and wear, a clothing combination of plaid flannel pants from L.L. Bean and a long or short sleeve t-shirt that could be worn for pajamas and to school. He needed his ankle foot orthotics strapped on, which required a few minutes of foot stretching. He also wore a splint on his clenched and tight right hand. It gave him more range of motion and flexibility. Nothing with Noah was fast, easy or uncomplicated.
Mike usually fed Noah breakfast while I dressed for work. When they were done eating, I came in with a hot, wet washcloth to de-crustify his face and brush his teeth. “Ouch! You’re hurting me,” Noah said, thrashing away from me as I attempted to wipe sleep from his eyes or remove egg matter from around his mouth. Moving through the morning routine, the next stop was the toilet (a large potty chair over the toilet with a big belt that Velcroed around his waist) where we put him and where he sat captive until one of us came to get him. Sometimes he told us he had to go, other times we just put him there when the time seemed right, like in the morning. It was all part of our rigid organization. Neither of us wanted our teenage son pooping his pants.
“I’m done. I pooped,” he called out. “Come get me!”
“Are you sure?” I’d tease him from outside the door.
“I’m sure.”
“You better be sure,” I said.
Mike and I sometimes debated who would do the wipe and toilet dismount. It usually depended on who was running ahead or behind schedule that morning.
Leaning Noah forward onto the toilet, I’d have a wad of paper in my hand to wipe his butt.
“There’s no poop in there,” I said looking into the bowl.
“Just kidding,” Noah said. “I’ll poop at school.”
“That’s weird, you’re a school pooper.”
Noah laughed at the idea of being a school pooper.
As a toddler he could feed himself—not really well, but good enough. By the time he was three, the tone and spasms in his hands and arms increased and he began to fling food or poke himself in the face with a fork.
“Come on Noah,” we coached. “Steady does it.” We guided his arm, hand and fork toward his mouth. We tried to feed him things that would stick on a fork. Chunks of cheese, scrambled eggs, macaroni and individual peas worked well.
“I can do it,” he said and then the idea, the excitement of success kicked in and his hand would spasm and off went the food. Meals with Noah feeding himself lasted at least an hour, and the food intake was minimal. So we fed him when he was a toddler and when he was a teen. We never thought much about it or how it might look to others when we went out to eat. It was just normal to us.
Disability makes for a close family mostly because accessibility makes friendships for disabled kids difficult. If there are steps to a friend’s home, or a playground isn’t accessible, the kid in the wheelchair is likely to be left out. Even when there’s a desire for inclusion, the logistics of moving a kid in a wheelchair without a specialized van is a challenge. We did as much picking up and dropping off as we were able, but it wasn’t enough for Noah to develop the deep friendships that other kids enjoy as they become teenagers. That continual contact that kids have with one another from about middle school to high school just didn’t exist for Noah. There were no sleepovers, video game hangouts, car rides, prep sports events, or dates for him. He had good friends in school, there were kids he talked about and socialized with during the day. He’d talk with kids on the phone sometimes, but after school and on weekends, it was just family. Mike and I were Noah’s parents and his best friends. If it bothered him that he had no close friends, he never mentioned it or complained to us. Of course, we wished things were different for our son, but that kind of normal would never be our reality.
As I did almost every night since he was a baby, I put his pajamas on him, first one damp foot, then the other, trying not to catch his toe on the fleece material. As I pulled the top over his face I hesitated, leaving him trapped. His wet hair was all I could see.
“Let me out. Help!” he said, his voice muffled. I waited a minute and laughed as he rolled his head around and finally escaped the neck of the PJs. I kissed his shampoo-scented head, propped him with pillows, then shut off the lights and left him to dream the dreams of a teenage boy.
Roberta F. King lives in Muskegon, Michigan and is the VP of PR & Marketing at Grand Rapids Community Foundation. Her articles and essays have been published in Atticus Review, Boiler Journal, Hippocampus and Lifelines (Dartmouth College Medical School). Her memoir about the life and death of her son Noah will be published by Principia Media in May 2014. Find her at: www.robertafking.com
Want to read more thought-provoking essays? Subscribe to Brain, Child: The Magazine for Thinking Mothers and see why we’ve been receiving awards for literary excellence since 2000.
