How applying for enrichment opportunities benefits our family
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,…
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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On our FA journey, everyone has something to offer
As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing…
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Learning from my daughter with FA about life’s unique journey
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.
A tool to deal with parental stress when a child has FA
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…
How reading supports us on our FA journey
“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…
Camp provides my child with FA an opportunity to grow
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…
Self-talk is important when parenting through challenges
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…
A tribute to the kindness of strangers along our FA journey
“Here, can I help with that?” The calm, low voice interrupted my ongoing battle with the payment station in the parking garage at our local children’s hospital. My dollar bills and credit cards had…
