How I’m redefining my priorities in parenting a child with FA
I was 10 years old when I heard the crack of wood on wood that sent my croquet ball flying off into a cornfield. I turned to see my grandfather’s face flash a “gotcha”…
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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The January to-do list includes financial planning for life with FA
It’s January, and despite the gray skies overhead and the lingering chill in the air, I feel a little more motivated to tackle the mundane tasks left on my to-do list. I’m starting with…
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Being proactive when scheduling my daughter’s medical appointments
Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler.
The 2024 FA Symposium gave me hope for the future of treatments
As I headed west down the familiar highway from Pennsylvania to Ohio, my mind spun as my eyes took in the autumn hues around me. After two amazing days at the 2024 Friedreich’s…
When it comes to clinical trials, our children deserve our courage
Staring across the table, I gave a reassuring smile to the student intern who was shadowing me that day. I mouthed “it’s OK” as heavily armored police moved through the home. We’d arrived at…
Why I’m deciding whether to homeschool my daughter with FA
I looked at both my hands and scoffed. The next 30 minutes were going to be interesting. I’m an incredibly right-handed person, to the point that my left hand is pretty much just along…
From embarrassing moments, FA has pushed my personal growth
“Because we cannot bend the space-time continuum?” The words rolled out of my mouth and landed with a thud in what was already an uncomfortable conversation. If you’d just walked in the room at…
Here come the yellow school bus and my feelings of self-doubt
Welp, it’s happened again. Summer has wound down and the gears of school have started to wind up. I can feel it pulling us into a new schedule that doesn’t necessarily include bowls…
Reclaiming the daughter FA put on the back burner
I have always loved children. This feeling has been woven into so much of my life and career. When I found out that we were expecting our eldest, I bought onesies and hung them…
If Easter bunny ears do the job, look for me to wear them
“My mom is kinda crazy,” my daughter Amelia said with a half giggle while talking with one of her friends. If you ask me how often that’s said, my response would be “a lot.”…
