When our youngest daughter, Amelia, was 5, she hung twine throughout her bedroom. Then she arranged blankets on top of the strands to create an elaborate tent with sections for rooms. I’d never seen anything like it. It was one example among dozens over the years of how Amelia looks…
Recalibrating — Elizabeth Hamilton
Ohio native Elizabeth Hamilton felt her world flip when her younger daughter’s health unexpectedly declined. It took six hospitals in five different cities and three states to obtain the diagnosis of Friedreich’s ataxia in 2020. A licensed social worker, Elizabeth believes that relationships are a healing force, and most problems can be solved if you have the right tools and the right people. Life takes unexpected turns, so we must take a moment to reexamine where we are and recalibrate.
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I had to bite my lip to keep from screaming as I watched my 14-year-old daughter, Amelia, who has Friedreich’s ataxia (FA), roll onto the basketball court. I’m constantly navigating a fine line between being a supportive mom and an embarrassing parent. Amelia is a teenager, after all. Her…
“So, does it ever get easier?” My eyes slid off the curly mop of brown hair belonging to a curious toddler and up to the questioning eyes of her mother. Pulled in by the pile of snacks my girls had left out on the picnic table, the 3-year-old had come…
As August marches onward, the memes around children returning to school abound. But the ads for back-to-school sales have triggered a new feeling in me this year, and it’s unpleasant. Once again, our 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has made normal feelings abnormal. Surrounded by other parents,…
While the research on the benefits of mindfulness is strong, my ability to engage in the practice is weak. I’ve discussed the positive outcomes of being present as a professional and then, in my personal life, tackled my never-ending to-do list like it’s a race. This builds up an anxiousness…
Unknowingly, I spent most of my life preparing to be the mother of a child with Friedreich’s ataxia (FA). Former life lessons show up again in the form of old friends, gentle reminders, or sometimes a smack on the head telling me I need to change my thinking. When…
I’m amazed at how many lessons my daughter teaches me just by being herself. We were at the base of Sleeping Bear Dunes in Michigan, an eight-hour drive from our home in Ohio. It was hot out, and the sun’s reflection on the sand made it even hotter. Because…
The weight I often feel as a parent can be crushing. The level of worry, feelings of inadequacy, sense of guilt, and overwhelming fear can easily hijack my mind. I know I’m not alone in having these feelings, and that it isn’t solely because my youngest daughter, Amelia, 11, has…
“Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed.” — often attributed to G.K. Chesterton My daughter Amelia, who has Friedreich’s ataxia (FA), has always been afraid of the dark. The bedtime requests to check under the…
Amelia went to summer camp! And I’m talking overnight, in-the-woods camp. My 11-year-old daughter, who has Friedreich’s ataxia (FA), had the opportunity to be away from home, get dirty, make new friends, and learn camp songs — all without the watchful and prying eyes of her mother. It started…
I have a secret: I talk to mirrors. Six years ago, I would’ve pulled out a Diagnostic and Statistical Manual of Mental Disorders with some concern about that, but much has changed since then — one of the biggest changes being my daughter’s diagnosis of Friedreich’s ataxia…
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