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.”

Though sometimes the reference is about how far I’ll go to advocate for her, I’ve also become known for enjoying myself in ridiculous ways. It’s one of the parts of my life that Amelia’s diagnosis of Friedreich’s ataxia (FA) has tried to change, but I’ve pushed back.

Katherine, columnist Elizabeth Hamilton’s oldest daughter, dresses as Elsa from “Frozen” while tending to her younger sister, Amelia, who’s dressed as Elsa’s sister, Anna, in a photo taken six years ago. (Photo by Elizabeth Hamilton)

The 2013 Disney movie “Frozen” took up residence in our home for about four years. We had all the toys and costumes, as well as fights over who got to be Elsa, who has magical powers. And it was a magical time as my daughters sang the movie’s most popular song, “Let It Go,” every single day, on repeat.

In the movie, which I’ve now memorized, there’s a line that sometimes flashes through my mind. It’s in the scene where Elsa has struck her sister, Anna, in the head with her icy powers, and their parents rush Anna to be healed by local trolls. They’re told the best possible course to cure her is to remove the memories of magic, but keep the fun.

I think about this idea a lot. I often focus on how I want to model advocacy in appointments or ways to feel comfortable and apply self-care while in the clinical setting. These skills are critical as I’m investing in raising a strong adult who, for now, is a child learning and acquiring good practices. But I also have her childhood to protect. It’s such a balance.

I want Amelia to look at her life through the lens of positive memories and not with too much regret about what was lost while waiting in hospital lobbies or under the hum of fluorescent lights in clinics. FA takes enough as it is, and I want to limit its power. Life is lived in all moments, and I want to live well.

Sometimes, I have to be ridiculous

Elizabeth, in the driver’s seat, and Amelia prepare to drive to Philadelphia for a doctor’s appointment on April 4, 2021 — Easter Sunday. (Photo by Elizabeth Hamilton)

At times, living well has meant being loving and attentive, but it’s also meant being ridiculous. That’s why I wore bunny ears when I loaded Amelia up on an Easter Sunday a few years ago to drive her to Philadelphia for a visit with neurologist David Lynch the next day. It’s why decorative window clings have been put up on hotel windows and Elf on the Shelf has shown up while Amelia has slept in the crisp white sheets of the oversized guest bed. I don’t always get it right, but I try.

I won’t be able to overshadow all the hard memories, the blood draws that haven’t gone well, or the medical tests that were difficult. But what I try to do, in all of it, is keep the fun.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.