Reclaiming my daughter’s lost childhood due to FA
Who knew that a cartoon would be the focal point of healing?
When our daughter Amelia first started showing symptoms of Friedreich’s ataxia (FA) and we headed off on our diagnostic odyssey, something else important happened: The laughter was sucked out of our home.
I didn’t notice it at first when a cloud of many hard emotions began to blanket our daily lives. Looking back at family videos, we were still doing all the childhood things: visiting parks, having zoo adventures, singing songs, and telling bedtime stories. But my husband and I felt a bit like zombies as we juggled numerous doctor appointments and tests and pushed back on inefficient systems to ensure that Amelia’s needs were being met.
I feel like we missed a huge part of our girls’ childhoods, a loss that I’ve mourned. But I also worked to provide myself grace. We were truly doing the best we could during a challenging time.
Now, years later, with a diagnosis in hand and arms linked around our community, I find myself reclaiming that time. Part of doing so involves introducing an Australian cartoon into our evenings.
‘Just one more!’
“Bluey” is an animated show on the Disney Channel about dogs. A nuclear family with two small, talking puppies — Bingo and Bluey — has its ups and downs. Moments of incredible parenting are interspersed with complete failures. Both of our girls started watching the show, and my husband and I found ourselves pulled in.
Our 11- and 13-year-old girls will snuggle up with us on the couch as we watch a 4-year-old cartoon character go to preschool, a cartoon dad play imagination games at the whim of a 6-year-old, and a fictional mom struggle with finding a moment to herself. In one episode, it takes the family 10 minutes to head out the door due to all the shenanigans of the pups. As we watched and laughed to the point of crying, my eldest blurted out, “Mom, that’s you!”
We giggle, our eyes sweat, and sometimes we delay going to bed because we want to watch just one more episode. I’ve thought about why we love this show so much. I think it has helped us reconnect with a time that feels lost. It’s put us in touch with an early childhood innocence I feel FA robbed from us.
They say you can’t get time back, but what I can do is reclaim elements of the time that were stolen. I can do this with laughter, staying grounded in the moment, and reminding my inner child to come out to play.
So this season, I will buy a gingerbread house kit and build it with my kids. I’ll pull out board games and act ridiculous at dinner. I’ll make hot chocolate with marshmallows and drive the girls around to see the holiday lights. I’ll intentionally full-belly laugh — a lot. And we’ll take time to snuggle up and watch “Bluey.”
Life is made up of these moments, so let’s capture them.
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.
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Comments
Paul Konanz
Nice!
Elizabeth Hamilton
Thank you!