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Bodies: How My Views about Bodies and Abilities Have Changed Because of My Daughter

four women in exercise outfits

My gym has a bank of televisions placed right above the only line of available treadmills. I’m not a fan of daytime television or local news, but I don’t have a choice when I’m running. My eyes are always drawn like magnets to the Doctor Phil episode, Viagra infomercial, or cooking show playing out in front of me. Usually it’s deadly dull, but one day there was something different on one of the screens. For several long minutes I found myself watching a skateboarding competition. I couldn’t help marveling at the smooth back and forth glide of the wheels and the breathtaking seconds during which the skateboarders hung suspended in mid-air. The beauty, rhythm, and patterns of their movements were almost hypnotizing.

As I watched, my mind slid back to what I had left behind at home that morning—my daughter, JJ, and her in-home therapist. The two were working on improving JJ’s feeding, communication, movement, and visual tracking skills. Only last summer, my four-year-old could walk on her own, though she needed a protective helmet for the occasional fall. But Rett Syndrome is a slow, insidious creep. My daughter’s balance had worsened considerably lately, and she now needed someone to hold, guide her, and keep her moving as much as possible. Someone also had to feed her, slow tiny bite by slow tiny bite.

All of this was in my mind as I watched the teenagers on screen, so fearless and sure, flying through the air—a plastic helmet all that separated them from the hard expanses of concrete below. As my healthy body ran mile after mile and their healthy bodies spun and soared, a thought clicked into place.

They shouldn’t be doing that.

Logically, I knew there was no direct correlation between my daughter’s disabilities and what the young adults were doing on the screen in front of me. But there’s a lot about special needs parenting that isn’t about logic. It’s only human to make connections like this, so I let myself follow the line of reasoning to its inevitable conclusion. Some of us get healthy bodies, and some of us don’t. If we have that gift, then it should be precious to us. We should protect it as much as we possibly can.

My daughter had the gift of a healthy body for only a year before it began to slip away. We fought hard for her to walk with the aid of shoe inserts and straps, only to have her balance falter. She would grip forks, crinkle papers, and splash water in the bathtub, only to have those things replaced by the useless wringing of hands and rhythmic snapping of fingers. She ate and drank normally until she developed a raspy cough, water dribbled from her mouth, and we had to thicken her liquids so they wouldn’t penetrate her airway. Her breathing also changed, often morphing into long spells of breath holding and full-body convulsions that could only be controlled with medication. The words she used to say gradually melted away. Now she used her eyes to tell me yes or no and only said garbled, nearly unintelligible approximations of go, done, play, hey, and up.

There are so many things most of us take for granted that JJ does not. Breathing. Eating. Chewing. Swallowing. Walking. Holding a spoon. Saying a word. Climbing a set of stairs.

I used to take these things for granted too, before life showed me how priceless they are.

I think differently about my own body since my daughter’s body has begun to change. Now when I run, it isn’t to keep fat off my mid-section. It’s to clear my mind. I need all the mental strength I can get in order to deal with what I deal with, day after day. When I lift weights, it’s not so I’ll look good in a tank top. It’s so I can lift my daughter’s body in and out of her high chair, hoist her on and off the changing table, and carry her up and down the stairs in our house. I’m not a big person, so I will only be able to do these things for so long. But I’m determined to make it as long as I possibly can.

This might sound grim, but there is a sort of liberation in this way of viewing bodies. Like most women, I used to fret more than I should have about every limp hair day, every unexpected blemish, and every pound gained over the holidays. These things still bother me a little, but then I shrug them off and move on. Because my hands function properly. My lungs pump air through my body when I run. My muscles feel the delicious ache of hard work after I do reps and curls with a free weight. For the time being, my body works, and it does everything I ask of it. There’s no reason not to celebrate this every single minute of every single day.

It's a simple fact of life that those skateboarding teenagers had no idea of the gift they were endangering. They won’t realize it until something threatens their own bodies or that of someone they love. If it’s true that youth is wasted on the young, then healthy bodies are wasted on healthy people. Too often we don’t know what we have until it’s gone.

I used to think my body was mine to do with as I pleased, but through my daughter, I’ve discovered that things are infinitely more complicated than that. Because if my body fails, it it will be my friends and family who will step in to help. I now feel a deep responsibility to keep myself healthy out of respect for those who might eventually take care of me. I don’t want my husband to have another person to lift and move, and so I run, not only for JJ, but also for him.

However, it's easier said than done to keep ourselves healthy. I know that. This is in large part because our bodies are inextricably linked with our minds and our emotions. Often, we wear those emotions on our bones and our muscles. Our sadness can show in too much or too little flesh. Our anger and hurt can shine through in the scratches, cuts, and scars we give ourselves. I, too, show my worries, fears, and struggles on my body. I am in good shape both because I need to be strong for my family and because some days, running is the only thing that keeps me sane.

Before JJ’s diagnosis, I never realized that when we look at someone’s body, their story is written there—even if we don’t know how exactly to read it. Sometimes an unhealthy body is a result of too much time spent caring for others. Sometimes it’s a sign of that person’s struggles. Sometimes a healthy body is a way of showing respect for someone who needs to be cared for. Or it could just as easily be a gift taken for granted.

My point with all of this is not that everyone should exercise and stay healthy. Even though I work hard to carve out time to run every day, it’s still a luxury not everyone has. What I’m saying is that having a loved one with a disability—especially a physical disability—makes us see and think about bodies differently. It makes us realize what a precarious, precious gift a healthy body truly is. What you do with that gift, if you have it, is up to you. Cherish it, push it to its limits, endanger it, protect it, use it up in service of someone else. It’s your choice.

My own choice is never to take my body for granted. It’s a luxury my family and I simply can’t afford.

Has becoming a special needs parent changed your body? How has it changed how you view your own and other people’s bodies?

Let me know in the comments below.


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