Face to face with a brick, I reflect on my role as parent and caregiver

This body of mine doesn't fully belong to me; it's also my daughter's

Elizabeth Hamilton avatar

by Elizabeth Hamilton |

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The cold, rough surface of the bricks beneath my cheek snapped me out of my shock. I had passed the fallen fire-pit lid in our backyard numerous times with the boomerang thinking that someone would trip on it. And here I was, that someone.

We’ve all done it, walked by a hazard with arms full and the to-do list actively engaged. Recognizing its presence and what’s needed to remedy it, we place it in the queue of things to be done. Then life happens. We get distracted, pulled in so many different directions, and the hose, Matchbox cars, Legos, tossed bath towel, or the dish on the counter’s edge lie in wait.

The irony of that moment, lying on the back patio, is that if our 11-year-old daughter, Amelia, who has Friedreich’s ataxia, habitually ventured into that area, the fire-pit lid would have been addressed immediately. But, because I was only placing myself at risk, I failed to act. That is, until my attention was fully caught by my complete wipeout.

A careful self-assessment determined nothing was broken. I was very much aware of all the parts of my body that broke my fall, however. The fear of having done any damage was not for my well-being, but for that of my child. I cannot help her maintain her balance if I cannot fully hold her hand. My scraped and screaming knee is needed to steady hers. A bath will be nearly impossible if I can’t lift her. It was about more than the inconvenience of crutches. I need my body to shore up the places where her body betrays her.

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Counting on me to make good decisions

Many conversations have taken place in Amelia’s hospital rooms, but one in particular hasn’t come up, and it is critical. This body of mine no longer fully belongs to me. We know this as parents and caregivers when we lean into these roles. Our children will be impacted by our financial decisions, our routines, and our lifestyle choices. But in the natural order of life, they build out independence.

We don’t think when we hold our newborns that, in 25 years, we may need to be able to help them transfer from a wheelchair to a bed. While our toddler runs around, we don’t look at the old sports injury with regret, worrying about how it might limit our caregiving ability when she is 18.

This is not our journey as a family, however. I must think differently and take more care in my choices. This reality hit me hard with the help of the bricks I hand-laid several years ago.

As we wave goodbye to 2023 and feel our faces warmed by the dawning of 2024, it’s a good time to take a moment to reassess how we are tending to our own needs. My value is not just in my role as a caregiver, but I cannot escape the reality that my daughter is counting on me to make good decisions.

So, dear reader, when you see that tripping hazard in the path that only you take, pause for a moment and move it. When you build out your schedule for the week, make sure there are spaces reserved for your physical, emotional, and mental well-being. The pull of being a caregiver is strong, and we must recalibrate often to ensure that we are balanced and investing in ourselves. I will work to do the same.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


Charmaine Hamilton avatar

Charmaine Hamilton

Good reminders for all of us. Thank you for another powerful article.


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