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…
“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 been rejected, and I was fishing in my purse for quarters while words were streaming out…
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