Recalibrating - a Column by Elizabeth Hamilton

How I’m setting personal boundaries this holiday season

Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life upside down. Who’s excited? I hardly remember my parenting days before…

What mermaid tails and hot skillets have taught me

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…

How I’m managing our reluctant return to school

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,…

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 ataxia (FA), has always been afraid of the dark. The bedtime requests to check under the…

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 learn camp songs — all without the watchful and prying eyes of her mother. It started…