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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