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.”…
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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How the slogan ‘Show Your Stripes’ took on a new meaning for me
I loved pop-up books as a child. The pieces that moved — delicate structures jumping off the page — captivated me, as did finding all of the flaps with hidden pictures. So it was…
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Why I trust parents to make good decisions for our children with FA
My daughter Amelia, age 12, almost missed being diagnosed with Friedreich’s ataxia (FA) because of me. I think about that sometimes when I need reassurance that I’ll put Amelia’s needs before mine…
Summer can be a dangerous season for those with heat sensitivity
Summer is here! In our home, that means fun things like trips to the pool and sleeping in. It also requires us to constantly be careful about the temperature in our house and keep…
FA reminds me I still have a lot to learn about navigating differences
From the moment I moved out of my childhood home, traveling became a passion of mine. It wasn’t just about seeing new places or tasting unique cuisine. (Well, maybe food had a little to…
It’s not ‘3 strikes and you’re out’ when dealing with FA
I have two children who are incredibly different. One is outgoing, and one is shy. One likes to go with the flow, and the other came into this world with strong opinions. One has…
The important message about FA my daughter found on a T-shirt
I love to travel. Being able to pack up quickly and go is something I value. It’s also a skill I’ve fostered in both of my daughters, Katherine, 14, and Amelia, 12. They’ve been…
My optimism is taking off with new Friedreich’s ataxia clinical trials
During a recent layover at O’Hare International Airport in Chicago, I learned some unexpected news about an upcoming pediatric clinical trial for Friedreich’s ataxia (FA), the disease my 12-year-old daughter, Amelia, has.
Facing my fear of inadequacy while parenting a child with FA
The pig was supposed to fly, but fear was holding her back. One summer night several years ago, I was watching the movie “Sing 2” with a child tucked under each arm. Both of…
Why raising awareness can be more complex than we might realize
“I know you!” The stranger’s surprise utterance greeted me at the elementary school of Amelia, my youngest daughter, who’s now 12. It happened years before she was diagnosed with Friedreich’s ataxia (FA).
What I focus on when addressing my daughter’s mobility challenges
The smooth, yellow rivets on the school bus caught my eye as it pulled up to pick up my 11-year-old daughter, Amelia. How often had I stared at them and not seen them? Then…
