From embarrassing moments, FA has pushed my personal growth

“Because we cannot bend the space-time continuum?” The words rolled out of my mouth and landed with a thud in what was already an uncomfortable conversation.

If you’d just walked in the room at that moment, you would’ve been incredibly confused as to what was happening. There was a doctor with a concerned look on his face; our then 5-year-old, who was later diagnosed with Friedreich’s ataxia (FA), wearing headphones while watching her iPad; a dad who was staring ahead; and a mom who’d just said something ridiculous. That mom was me.

We’d just received some scary test results early in our diagnostic journey and had been told that another test was needed. I’d been asked if I understood why both tests couldn’t be done at the same time. Overwhelmed and upset, I leaned in hard and made a joke about being in two places at once and space-time continuums. It was not my finest mom moment. The doctor was not impressed.

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Processing my feelings my way

Recently, I’ve found myself keenly aware of the uncertainty in dealing with FA and a child with changing abilities. I’m also becoming cognizant of my limitations in time and energy. Others may not see the same thing when looking in from the outside, but I know the thoughts that sometimes swirl in my head.

I’ve mentioned before my feelings of self-doubt and my desire to make sure I’m hitting the high notes of parenting. These are feelings I don’t just get over or move past. But they are things that I can move through. I can acknowledge that these feelings are bubbling up, and I can then ask myself what I need in the situation.

Maybe it’s a moment, a deep breath, or just acknowledgment of what I’m feeling.

Years later, getting hard information about our daughter’s well-being is still overwhelming. I might still react by making a misplaced joke. The difference now is that I can call it out. I’ve become quick to say that something is challenging to process or understand. In those authentic spaces, sometimes incredible things can happen.

As for the doctor who was on the receiving end of my space-time continuum joke? He was the first medical professional to call me when we received Amelia’s diagnosis from genetics. He walked me through the clinical trial website and how to use it over the phone. That was important because now we had a name for what we were fighting. There were words of wisdom and encouragement, as well as a reminder to reach out if I needed anything.

I think about that sometimes as a reminder to myself that amid mistakes, uncertainty, and vulnerability, some cool relationships, including professional ones, can take shape.

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.