Facing my fear of inadequacy while parenting a child with FA

It's OK not to understand everything, but showing up is key

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by Elizabeth Hamilton |

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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 cheering on, was a talented pig performing a musical number on stage before a large audience, which included her litter of piglets and her supportive husband. The act was supposed to include jumping from a high platform with a safety harness that would cause a flying effect. But she couldn’t do it because she was too afraid.

But then her manager — a dogged cheerleader who happened to be a koala — was thrown from a significant height. At that moment, Rosita raced down the plank and jumped to save her friend. After cheering with excitement, my daughters began discussing why Rosita was finally able to jump after being frozen by fear. They asked me why she had done it. “Because she’s a mom,” I replied.

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Friedreich’s Ataxia Forces Me to Process and Cope With Fear

One doesn’t have to be a parent to do incredible and selfless things for others. I’ve worked alongside many champions who aren’t parents but have gallantly cared for others in incredible ways. But for me, something shifted when I became a mom.

That change was heightened even more when my youngest daughter Amelia’s health began failing. She was diagnosed with Friedreich’s ataxia (FA) four years ago, at 8 years old. That created a stronger will in me — forged by the love of my child — to overcome my past insecurities. It made me braver.

Overcoming insecurities with research

In college, I struggled with science courses. My transcript shows a rough freshman year in which I barely passed genetics and did only slightly better with molecular biology. The “slightly better” was due to the fact that I had just taken molecular biology in high school. Out of embarrassment, I didn’t ask questions in college when I couldn’t comprehend concepts that were being taught.

I now find myself with a child I love who has a debilitating disease. I want to understand the science behind it better yet I often feel inadequate. It’s hard.

When it comes to research publications or news about FA, or even attending Friedreich’s Ataxia Research Alliance (FARA)-sponsored events, I sometimes find myself in a similar place as Rosita, the singing pig. I’m clinging to a sense of inadequacy, afraid to jump or ask questions because the science can be overwhelming. What if I ask a question and I sound stupid?

Then I remember that my beautiful Amelia needs me to let go of my fears and rush down that plank — not because I need to be an expert in science, but because understanding better will help me advocate for her.

Last week, FARA sponsored the second of two “Flash Talks” webinars held in May for FA Awareness Month. You can view it at FARA’s YouTube channel. The science was fascinating. Even though I didn’t understand all of it, I still learned a lot.

If you sometimes skip over these presentations because the research can be hard to understand, take comfort in the fact that I get overwhelmed, too, and that’s OK. I still show up in the ways that I can. I even recently moderated one of these talks and asked several questions.

I also attend FARA’s annual FA Philly Symposium and take copious notes while Googling words. I am fueled by the people I meet and am dedicated to learning.

We still occasionally watch “Sing 2” in our house, a movie I recommend. The characters who sing, dance, and look to their friends for help in overcoming challenges remind me of the FA community.

Now, when Rosita runs to save her falling friend, Amelia sometimes exclaims, “Here comes the mom!” It gets me every time.

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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