“Is it something sad?” Amelia always asks this question when I tell her we need to talk. Like an anxious employee worried about being in trouble with the boss, Amelia fears hearing sad news. My beautiful 13-year-old daughter, who has Friedreich’s ataxia (FA), has a very sensitive heart. Usually…
Recalibrating - a Column by Elizabeth Hamilton
Even with the windows closed, I could hear the loud rattle of my husband’s old car as he pulled into the driveway. It signaled that the time had finally come for a dreaded task we’d been putting off for a while: car shopping. While some people find the prospect of…
Winter is hard on me. The snows of January were incredibly beautiful, but the gray skies have left me feeling worn down and tired. The winter and cold weather are also hard on Amelia, our 13-year-old daughter with Friedreich’s ataxia (FA), and she does require an extra level of…
As we drove down the street, the morning jam to music paused briefly when my eldest daughter said, “Don’t forget to go Dad’s way.” I smiled, knowing full well what she meant. Dad’s way was a shorter route to her school, but my daughter was also telling me, “Please pay…
I imagine that many homes like ours, especially those with someone who has Friedreich’s ataxia (FA), can become quite loud. It’s common to hear requests shouted across our home, like asking for longer socks or a sweatshirt that was left on the bedroom floor. As my 13-year-old daughter Amelia’s…
“You can’t miss us. We have a huge metal ramp attached to the front porch,” I explained while giving directions to our home recently. That particular line made me both chuckle and sigh. Getting the ramp installed was emotionally challenging. The former landscaping, once vibrant with spring bulbs and cheerful…
Everywhere I look, I see advertisements on billboards, computer monitors, and even at the pump telling me what I should buy and how I’m missing out on having certain things. We are bombarded by it. We don’t hear as much about personal finance, however. Discussing that often leaves me feeling…
As I heard the words come out of my mouth, I knew I sounded crazy. Yet there I was, pitching the idea to my husband: I wanted us to embark on a 16-hour journey to a place so remote that there’d be no running water or electricity. And we were…
“Yeah, that was not me. It was you.” I finally said it out loud after all these years. I was not the first person to recognize that our daughter Amelia, then 4, was experiencing symptoms of Friedreich’s ataxia (FA); it was my husband. He noticed things that I, despite…
Oh, those lazy days of summer are here. Unless I’m your mom and you have Friedreich’s ataxia (FA). In that case, it’s game on. Years ago, I noticed a yearly pattern with our daughter Amelia, who’s now 13. Long before she was diagnosed with FA at age 8,…
Recent Posts
- I choose not to be embarrassed by my disability
- AAC 2026: How social media led to an FA diagnosis, and patient advocacy
- AAC 2026: Occupational therapy can help manage FA challenges
- AAC 2026: Exercise, mobility devices key in managing FA, preventing falls
- MRI study shows how FA disrupts communication for brain regions