Welp, it’s happened again. Summer has wound down and the gears of school have started to wind up. I can feel it pulling us into a new schedule that doesn’t necessarily include bowls of melting ice cream and homemade lemonade, half of which is in ice-filled glasses while…
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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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…
I have always loved children. This feeling has been woven into so much of my life and career. When I found out that we were expecting our eldest, I bought onesies and hung them up around the entrance to our home. When my husband came home, I held up one…
“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.” Though sometimes the reference is about how far I’ll go to advocate for her, I’ve…
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 while navigating her medical care. It was the summer of 2020, and I was sitting with…
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 an eye out so that our daughter Amelia doesn’t overheat. Even before she was diagnosed…
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 do with it.) It was mostly about seeing different ways of living and meeting new people.
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 no known medical concerns, and the other, Amelia, 12, has Friedreich’s ataxia (FA). I’ve parented…
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 able to pack their overnight bags since they were small. I love this level of independence…
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. My flight to Chicago had been delayed by weather, which I find curious because the climate…
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 my daughters were encouraging the character on screen to jump. Rosita, who my girls were…
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