A Body to Keep Him Safe:: Reflections on Aging, Caregiving & Motherhood

Today, I stare in wonder at his ultrasound images. Oh how I loved him so much, before I ever really knew him. When he was still more of a possibility and a mystery than an actual human being with a body that will need a lifetime of total care. When I had no idea what was to come, and how profoundly he would change me in a decade that seemed both impossibly short and interminably long. 

3D ultrasound image of a baby in the womb

When I was pregnant with him {my first baby}, I feared somehow I was going to hurt him, or worse. If I ate a ham sandwich, or slept in the wrong position, or a dog jumped on my belly, or I had sex…any of these things I was terrified would have devastating consequences. Not once did I consider the impact of genetics- part of my body, but the part I had absolutely no control over. The part of my body that wasn’t enough to keep him safe. 

the body of a pregnant woman taken from the neck down

 When he was a newborn, he dropped below 5 pounds, and every time I picked him up, I feared he would slip right through my arms like water. He’s 10 now, and I still have to carry him like a baby, cradled in my arms. But he’s nearing 60 pounds, and sometimes he’s so heavy that I have the same fear- that he’s going to slip and fall right through my arms. That my body isn’t enough to keep him safe.

a newborn baby in an infant carrier

My body hurts much of the time now. I’m in my 40s and my body is tired. Being a primary caregiver to a person with physical and mental disabilities is exhausting, both physically and mentally. I want so much to scoop him up, to dance with him, to rock him to sleep, but both our bodies fight against these desires. His body, with its muscles that don’t know how to relax, hips that have required two major surgeries to stay in place, and a spine that this year decided to go rogue and curve out instead of staying straight. And my aging body, now wearing a back brace much of the time, craving more exercise than I give it, but spoiled with an abundance of hot bubble baths, heating pads, and Advil. My body has to keep working. It has to keep him safe.

A Body to Keep Him Safe:: Reflections on Aging, Caregiving & Motherhood 

He’s been on medication for a year and a half to keep his body from getting much bigger. He won’t need an adult sized body, but he will always need to be held. So for his sake, and ours, we’re doing what we can now to make life in the coming decades more manageable. There are side effects to this therapy that have changed his body, but we believe they are worth the end result:: a body that hopefully will always fit in his mama’s lap, no matter how awkwardly.

When we talk about bodies, stages of life, and parenting, it’s usually logical and linear. When they are small and light, babies are held. They wake us up at night crying to be cuddled and fed. When they become children too heavy to be carried around, they are able to walk. They sleep through the night. They potty train. And they keep growing, and their bodies adjust, and get stronger. They become teenagers, and eventually become totally independent adults, at least physically. 

No woman considers when she plans to have a child that that child could possibly need newborn-level care forever. That his body may get bigger and heavier, but he will never sit up, walk, talk, eat, or potty train. And at the same time, her own body will keep aging, wearing out, and breaking down. And that her mental health will be challenged with exhaustion, fear, and grief for the loss of what she expected of life and motherhood. It’s the loss of a logical and linear path- of bodies that work and make sense and don’t hurt all the time. Of bodies that are safe, and are able to keep their children safe.

A Body to Keep Him Safe:: Reflections on Aging, Caregiving & Motherhood

But mercifully, alongside the pain, the grief and the fear, there is so much more joy, love and gratitude. This child, this miraculous human who grew inside me and continues to mark both my body and my spirit, is the best thing that ever happened to me. He, along with his siblings, is the greatest gift of my life. And as long as I am able to, I will carry his body and keep him safe.

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Elizabeth was raised in Houston and met her husband Ryan shortly after graduating from Texas A&M with a journalism degree. A few years later, Grayson {Sept 2010}, turned Elizabeth’s world upside down, not only with his sparkling blue eyes and killer smile, but with his profound disabilities and diagnosis of Mitochondrial Disease. After two years of navigating the world of special needs parenting, Elizabeth and Ryan were blessed with Charlotte {Jan 2013} and Nolan {Sept 2015}, perfectly completing their party of five. Elizabeth and her crew live in Katy, and when she can steal a few moments for herself, she can be found out for Mexican food and margaritas with girlfriends, binge-listening to podcasts and audiobooks, or trying once again {unsuccessfully} to organize her closet. In addition to her role as Managing Editor of HMB, Elizabeth writes about faith, politics and special needs parenting for publications like Scary Mommy and HuffPost.You can connect with Elizabeth on Facebook,Twitter, Instagram, or ElizabethKBaker.com



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