Love Regardless

Love Regardless

By Roberta F. King

noah scans-118I 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:

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Present Imperfect

Present Imperfect

By Ona Gritz

0-1My son didn’t seem to like me all that much in the first weeks of his life and I couldn’t say I blamed him. I may have managed not to drop him, or leave him on a grocery shelf as had happened in my dreams, but I nearly sat on him moments after laying him on my bed. And somehow I closed a snap on his little cotton sleeper with his skin pinched in between the halves.

I also cried constantly, but this was one thing we had in common.

“Everyone goes though that,” my friends who were parents assured me. “Everyone finds it hard at first.” But not all my graceless moments as a new mom were universal. I have cerebral palsy, a physical disability that results from an injury, usually at birth, to the part of the brain that controls motor function. My case is actually very mild. I walk with a limp and have tight muscles and limited dexterity on my right side. It’s often gone unnoticed, even, until the birth of my son, by me.

For as long as I could remember I’d wanted to be a mother and felt sure I’d be a natural at it. I worked as a children’s librarian and whenever a group of five and six year olds came in for story time, they raced for the spots on either side of me so they could listen with their knees touching mine.

During my pregnancy I read through piles of parenting books. I discovered there are two distinct camps. The Ferber faction believes that if babies are left to cry for allotted amounts of time they learn to soothe themselves, while the Sears faction believes that if babies are attended to quickly and held much of the time they grow up secure, having experienced the world as a loving, responsive place. Without having to think about it, I knew I would be a Sears mom and practice “attachment parenting.” I’m here for you was the first and most essential lesson I wished to teach my son.

I also pored over books on prenatal nutrition, some of which made me horribly anxious. When I read in a book on herbs that oregano could cause a miscarriage, I flew into a panic.

“We had Italian last night,” I trailed my husband through our apartment to say. “We have it all the time.”

“Plenty of pregnant women have eaten spaghetti without hurting their babies,” he pointed out, adding wistfully, “You know, you used to be so easygoing.”

He was right, I knew, but I couldn’t help the fear that rose inside me like the steam heat that banged through our pipes. I was already so in love with our baby, it felt crucial that I do everything exactly right.

As for my cerebral palsy, I can think of two times it crossed my mind while I was pregnant. Once when my midwife asked if I wanted to test for spina bifida or Down’s syndrome—I declined, insulted by the implication that a life with a disability might not be worth living—and again in my cumbersome eighth month when I joked to a friend that I was already used to moving awkwardly.

What didn’t occur to me until after my son’s birth was that motherhood required real agility. The first time I tried to nurse him he was unable to reach my breast because of the sloppy cradle my uneven arms made for him.

After a harrowing day of trial and error, I was able to breastfeed, first with the help of nurses who propped pillows under my son and later, on my own, by using a tire-shaped nursing pillow. Though that fundamental issue was solved I soon discovered other problems. I wasn’t able to bathe the baby without help, or swaddle him, or eat anything more challenging than a breadstick while nursing. And, as it was the only activity that kept my son from screaming like he was being dismembered, I nursed constantly. Hour after hour I sat in our glider rocker and, for all I was able to do for myself with a baby in my arms, I may as well have been in traction.

During his brief paternity leave, my husband did his best to help me. He brought me glasses of water with bendy straws to make drinking more manageable. He gave me his protein bars since I could eat them with one hand. But after a few days, he sighed loudly at each request. Clearly he felt my “convalescence” should be over. But my disability, of course, was permanent. It always had been, but since I’d rarely faced real physical demands in my childless life, it had never felt so prominent. In those not so long ago days, I thought of cerebral palsy as a cosmetic issue—I had a limp which I hoped wasn’t too noticeable. Now, glued to my seat, I felt humiliated and ashamed of all I couldn’t do and of how ignorant I’d been about my own body.

“Sorry to ask again,” I called out only when my thirst became unbearable. “But if you could just refill this glass…”

Visibly relieved, my husband returned to work after his allocated ten days. Before he left that first morning he dug the camel pack he used for mountain biking out of the closet and filled it with water, then taped it to the back of the glider rocker, positioned so that I could take sips from the tube just by turning my head.

With that bag in place like a catheter, I sat in the empty apartment and nursed until I was dizzy with hunger. That’s when I realized just how hard it would be to do something about it. I could carry a newborn into the kitchen if I did so with great care. I could probably even prop him on one shoulder long enough to open the refrigerator. But then what? With my one reliable hand cupping his head, I couldn’t pour cereal or milk into a bowl. Nor could I use a spoon.

We had a bouncy seat for him and I made a few attempts to place him in it, but he howled with rage before I’d even strapped him in. So, though feeding myself was impossible with a baby in my arms, in my arms he stayed, partly because of my almost religious belief in the tenets of attachment parenting, but mostly because I hated to upset my boy.

Now that we were on our own during the day, I quickly discovered other feats that were beyond me. Stairs had never been my forte, but as long as I had a banister I did all right. But in fact my balance was precarious enough that, even if I held the baby in a carrier to free my hands, I couldn’t be sure I wouldn’t trip and fall. This meant we weren’t able to climb aboard a bus, or visit our inaccessible town library, or leave our fourth floor apartment the many times the elevator broke down.

Though these new limitations made my life considerably smaller, motherhood deepened it. Every day, I gazed into my son’s wide blue eyes and fell more in love with him. Yet the look he gave back was stern and, it seemed to me, judgmental. I imagined he saw me the way I’d begun to see myself, as klutzy and inept.

I rocked him and nursed, talked and sang to him. Really? his cool stare seemed to say. This is the best you have to offer?

Meanwhile, my husband worked long hours and often went out with his coworkers afterwards to decompress. I had an open invitation to join them for drinks or late dinners, but of course I was otherwise occupied. Caring for my son took all my time and courting his affections took all my attention. He continued to respond to my devotion with an austere expression which just made me all the more desperate to please him.

On Thanksgiving, when our boy was seven weeks old, we went on our first family outing to my husband’s aunt’s house in the suburbs. As soon as we arrived relatives whisked the baby from my arms and vied for turns to hold him. Though I was free to move about, to gorge on the amazing array of appetizers that crowded all the surfaces in the room, I stayed on the couch like someone with Stockholm syndrome, eyes on my captor in case he needed me.

It wasn’t until the end of the evening that my son let out his usual glass-breaking wail. My husband’s aunt, who was holding him at the time, tried cooing and swaying and rubbing his back. He just cried harder.

“I give up,” she finally said and passed him to me.

I assumed he wanted to nurse, but the moment he felt me take him he grew quiet.

“He knows who he wants,” my aunt-in-law said, and I realized it was true. He missed familiar me.

As I felt my son settle contentedly in my arms that brisk autumn evening, I also felt a calm begin to spread inside me. I realized that, though I seemed more disabled now than before I became a mother, that didn’t mean I actually was more disabled. Rather, I’d stretched myself, and in doing so, grazed the edges of my capabilities.

“You’re teaching me who I am,” I whispered into my son’s tiny ear while around us our family all spoke at once, saying their goodbyes.

Not long after, my son smiled at me, and when he learned to reach out his arms it was to reach for me. As things grew easier between us, I went easier on myself and worked to meet my own needs while taking care of his. I was still clumsy with him, but he didn’t seem to mind. I came to see that my touch, no matter how inelegant, was home to him, just as my imperfect body had always been home to me.

Ona Gritz is a poet, children’s author, and columnist for Her essays have appeared in More Magazine, The Utne Reader, New York Family Magazine and elsewhere. She is currently at work on a memoir.

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Along for the Ride

By Camilla Medders

summer2008_meddersJon, Chloe, and I are driving home from Chloe’s horseback riding therapy. It’s a forty-minute drive past hilly cow pastures, over brown stagnant streams, and through tiny crumbling towns. Jon is concentrating on the winding road, and I am thinking about the chores that are waiting for me at home. Chloe, who is three, is watching for oncoming traffic. Oncoming traffic is one of her favorite things. If a car is the right shape and color, and especially if it has its lights on, she giggles. A few minutes ago, Jon tried pointing out a truck to her, but all he got was a small polite smile. Apparently, the traffic game is private. Parents are not supposed to play.

We drive out to Horses for Healing every Thursday so that Chloe can spend forty-five minutes lying and sitting on the wide back of an old draft horse named Frank. A teenage volunteer leads Frank around the arena, and the therapist and I walk on either side, supporting Chloe with all four of our hands because she can’t sit by herself. Chloe has cerebral palsy, which means her body is like a wooden puppet without strings, her muscles both too stiff and too weak to allow her to move or balance easily.

While we made our wide figure eights around the ring, Jon was sitting with another parent, the mother of a little girl with spina bifida.

“That other mom said something kind of strange,” says Jon as the car rolls over a hill. From the backseat, Chloe giggles at a red truck.

“What’s that?” I ask.

“When I told her Chloe has CP, she said, ‘Is she, like, happy all the time?’ “

“Uh-huh,” I say. I think I know where this is going.

“So I say, ‘Yes, actually she is.’ And she says, ‘Because we know a guy who has CP and he’s always happy. I wonder if it’s related.’ Isn’t that a weird thing to say?”

“Yeah, it is,” I say. “I’ve heard that before, though. It’s some kind of bizarre stereotype.” Now there’s a long line of traffic coming at us. The first car is unremarkable, a gray lump with its lights off, but the second vehicle is a big, black SUV, and this gets Chloe going so much that she laughs at the next six cars, too. Jon and I smile at each other.

The first time I heard that people with cerebral palsy were always happy was right after Chloe was diagnosed. At least two people told me they knew kids with CP. “And they’re such wonderful people,” they said. “There’s just something about them. They’re always happy.” Of course, I dismissed it. It seemed like such a ridiculous thing to say: Having a brain injury at birth makes you happy. At best, it was some sort of developmental disability myth, like “people with Down syndrome are so friendly” or “people with autism are good at math.” At worst, it sounded like condescension, as if people with CP didn’t know better than to be happy, or as if they were expected to be so unhappy that just making it through the day made them seem extra happy. I decided this was just another strange thing that people say when they find out you have a child with a disability.

Except that as Chloe got older I realized that she is happier than other kids. She’s always finding things to laugh at: the way a bank teller shuffles papers, her father’s habit of talking with his hands, my imitation of her preschool teacher. As we walk through the grocery store, you can see her smile reflected on the face of every person we pass. She doesn’t even mind when other kids take her toys. In fact, she throws fits so rarely that when she does, I usually assume she’s sick. At first, I worried these were signs that she was less intelligent, that the brain injury that distorted her muscles was clouding her mind. Now that she’s older and able to communicate better, I know that’s not the case.

I’ve decided that Chloe’s so happy because, unlike most of us, she accepts that much of life is beyond her control.

Of course, saying that Chloe or anyone else is “always happy” is an exaggeration. This evening, for example, she whined and whimpered when Kerri, the hippotherapist, rolled her over on her stomach. It’s hard for Chloe to lift her head when she’s prone, and she hates not being able to see what’s going on, especially when Kerri and I are calling her name, begging her to pick up her head and smile at us.

When we were finally done with the prone exercises, Chloe got to sit up on the horse where she could easily turn her head from side to side to smile at Kerri and me. “Yeah!” she yelled, using the only word she can always say clearly. Although the horse is so tall that Chloe’s head is above mine, she’s never afraid. She has no fear of large animals, no fear of falling. She puts her trust in all of us: me, Kerri, Frank, the teenager whose job it is to lead Frank. She knows we’re all here just for her.

Children with moderate or severe cerebral palsy experience their first years differently from typical kids. For most kids, getting older means gaining control. A typical infant learns to grab at toys, then to crawl wherever she needs to go. Soon, she learns words she can use to tell her parents exactly what she wants. Every time a child gains control over some aspect of her life, this control becomes precious. A toddler who has learned to walk cannot bear to sit still in the chair that she loved just a few months ago. A three-year-old who has learned to use complete sentences will no longer be content to watch the world without comment.

And control is addictive. The more we have, the more we want. A child who conquers her toy box now wants control over her meals, the TV, other children, her parents. These parents, determined to guide their offspring from a chaotic toddlerhood into a well-mannered childhood and, eventually, a productive adulthood, struggle to maintain control over her. The child and her parents behave as if control were a commodity they can collect, build up until it safely covers their entire lives. It will take years for them to unlearn this, if they ever do, and in the meantime, every unpredictable event is a chance for them to lament the fact that they don’t have enough control.

Chloe, on the other hand, is developing mentally and emotionally without developing much physically. At two years old, she had the motor skills of a newborn. She could not use her hands, lift her head, or make any sound besides crying. She had to rely on us to move her from place to place, to bring her toys, to decide what she ate. For the most part, that was okay with her. After all, she’d never known anything else, and even though she had little say in the details of her life, she was always cared for. In her first couple of years, instead of learning how to change and control her world, Chloe learned to accept it the way it was.

In his essay “Giving up the Gun,” Andre Dubus admits that he carried a gun for thirteen years—not for his own protection but to be ready in case he came across a rape or a murder in progress. He decided to give up his collection of guns after a car accident left him unable to walk. At the end of the essay, he explains,

I have written all of this to discover why, sitting in my wheelchair on a train, I gave up my guns. But I do not know … My body can no longer do what I want to do, and it cannot protect my two young daughters, and my grandchildren, from perils I used to believe I could save people from. I have not learned the virtue of surrender—which I want—but I have learned the impossibility of avoiding surrender.

The only way to fight the addictive quality of control is to realize how little we actually have, and the best way to do this is to have our control blatantly denied. This terrified Dubus, but Chloe isn’t scared. When it comes to learning the virtue of surrender, she’s a lot further along than anyone I know.

People are always commenting on how “good” Chloe is, especially when we are in public. When I’m in a cynical mood, I want to tell them she’s only good because she doesn’t have a choice. I suspect that by “good,” they mean she’s not doing the sort of things other three-year-olds tend to do in public, such as running around and talking loudly. But Chloe can’t do these things, I want to tell them. If she could do anything except sit quietly in her chair, she would. She just doesn’t have a choice. But then I remind myself that she does have a choice. She has to sit in her chair, but she doesn’t have to sit there so quietly, so happily. Chloe can throw a fit just as well as any toddler, but she doesn’t do it that often, because she doesn’t find many things to throw fits about, especially out in public.

For her, there are better things to do. She watches every person who walks by, trying to catch their eyes and get them to smile at her (she’s usually successful). She keeps an eye on the busboy because, for her, clearing tables is a spectator sport. She laughs at other kids and listens to the conversation and watches people eat. Chloe is almost never bored.

Apparently, neither was Christopher Nolan, an Irish author with severe cerebral palsy who wrote a lightly fictionalized account of his life called Under the Eye of the Clock . Nolan could not walk or speak, and he used a rod held in his mouth to type his poetry and memoirs. In one of the incidents he described in his autobiography, he spent an hour alone in his third-grade classroom, forgotten when the other students went to an assembly. Knowing he was stuck there for a while, Nolan went about finding something to do. First, he imagined himself as a famous Irish tenor. After that, he created his own version of Van Gogh’s self-portrait in his head. Finally, he thought of his sister and remembered every detail of a show she improvised for him, singing and dancing on the stairs in their house. When he heard the class returning, Nolan’s only lament was that his teacher would feel guilty for leaving him, thinking, “I must not appear sad, anyway I’m not.”

In the car, Chloe is laughing again, even though there aren’t any other vehicles around. I tilt the rearview mirror toward me, and I see that she’s grabbed a handful of her own hair. “Look, Jon,” I say, turning the mirror back toward him, “Chloe’s got her hair.”

“Good job, Chloe,” Jon says, and she laughs louder. We all know it’s something to celebrate, a major milestone, even if it’s not on any child-development chart. The fact that she can lean her head down and reach her arm up and close her fingers around a piece of hair and pull means that Chloe’s body is working better than it was a month ago. She finally yanks too hard, pulling out a handful. It must hurt, but for Chloe, who has suffered through gastric reflux, stomach surgery, and six weeks of daily shots to stop her seizures, this is nothing. Besides, being able to hurt herself is one more tiny piece of control, and every piece is a gift, not to be complained about or taken for granted.

I’m sleepy by the time we get home. It’s been a long drive at the end of a long day, but there are lots of things left to do. Chloe needs her dinner, which consists of a carefully measured blend of soy milk, oatmeal, vegetables, and flaxseed oil liquefied in a special blender and poured directly into her stomach through a feeding tube. Jon and I eat with her, and she watches our food move from our plates to our mouths, laughing at us as if we’re doing something really odd. She tries a small bite of potatoes from Jon’s plate, grimaces at the texture, then smiles proudly as she wrestles it down her throat. Jon offers to give her a bath, and while they’re in the bathroom, I fold the foam pads that I use for a special massage Chloe gets every evening. Halfway through this task, I hear Jon calling from the bathroom. He’s forgotten Chloe’s pajamas. Sighing, I put the foam aside and walk down the hall to Chloe’s room, where I have to search through her drawer to find the right pajamas for an autumn evening: not too warm, not too cool. I grab a diaper just in case he’s forgotten that, too, and open the bathroom door.

Chloe is lying on her back, kicking her legs in the shallow water. Jon is standing over her, a toothbrush in his mouth.

“What are you doing?” I ask.

He turns to the sink and spits. I’m already kneeling next to the tub, my hand on Chloe’s head.

“I’m brushing my teeth.”

“You need to keep one hand on her. She could roll over and drown.”

“Chill out, Mommy,” says Jon, wiping his mouth on a towel. “She knows not to roll over. And I’m right here. I’m not taking my eyes off her.”

“Remember what happened last week?” Last week, when Jon was bathing her, Chloe kicked up a wave and got a little water in her mouth. I heard her coughing and rushed to the bathroom in time to see Jon sitting her upright and patting her back. Jon was flustered, I was panicked, but Chloe thought the whole thing was hilarious.

“God,” says Jon, lowering himself onto the floor next to me and pouring shampoo into his hand. “Aren’t you ever going to forget about that? A little water never hurt anyone.”

I realize I’ve gone too far, so I retreat, closing the bathroom door behind me. I finish folding the pads, but I can’t relax. I keep analyzing the sounds from the bathroom: Why was that splash so loud? Which of them is doing all that coughing? Was that a toy or Chloe’s head hitting the floor? I go out to the back deck, where I can’t hear anything, can’t do anything, and immediately I feel better.

Admitting we are not in control, being grateful for what we have, learning to be content just sitting still: These sound like spiritual ambitions. “Let go and let God,” Christians say, while Buddhists claim that all suffering comes from attachment, our struggle to find happiness by controlling things and circumstances. After we found out about Chloe’s disability, Jon and I realized how little control we have over what happens to us. Like many people, we’re still trying to accept that, to stop thinking about what might have been or what could be, if we just work hard enough. Sometimes we turn to prayer or meditation, to sitting still with only our wayward minds and our sense of something greater for company. These things are very hard to do, which makes it almost irritating that our three-year-old has always been an expert at them.

I’m not going to start proclaiming the stereotype, though, telling everyone that people with cerebral palsy are happier than the rest of us. Living with cerebral palsy involves huge challenges that could make anyone frustrated or depressed. And people with cerebral palsy deal with the same everyday problems as the rest of us. I’m sure the cerebral palsy demographic has its share of unhappy people. But watching Chloe develop, I suspect she has had a unique opportunity: to learn, early in life, that she can find profound happiness just going along for the ride. As Chloe gets older, she’ll gain more skills and acquire more equipment, and hopefully, someday, she won’t have to depend on other people to control the details of her life. But I hope that she can continue to find strength in surrender.

As I open the back door, I can hear Chloe crying. I check the bathroom, and everything looks normal: the tub drained, the washcloth folded neatly over the faucet, her wet towel still lying on the floor. Apparently, the screaming is just Chloe’s usual bedtime meltdown. She loves being awake, and she thinks that giving up sleep is just a matter of fighting hard enough. Unfortunately for everyone, the one thing she desperately wants to control will always elude her. I can tell from the sound of her crying that she’s exhausted. In fifteen minutes, she’ll be fast asleep. I stick my head through the door and see Chloe flailing in her bed. Jon is standing over her, stroking her head and murmuring in her ear.

“Do you need me to take over?” I ask.

“No, thanks,” he answers without looking up. “We’ve got it all under control.”

I slip back out the door and close it behind me, smiling to myself. Jon is wrong. We have very little under control. But right now that’s okay with me.

Brain, Child (Summer 2008)

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