How Friedreich’s ataxia complicates even the most simple tasks
When a basic part of our morning routine recently made me snap
What do my email inbox and toothpaste have in common? They both have started to wear me out.
I always prided myself on my tenacity and work ethic. I knew how to hustle, get things done, organize, streamline, and then reassess to do it better next time. Then Friedreich’s ataxia (FA) arrived on the scene, and now my best personal tools for being effective are only able to do so much.
When our daughter Amelia was diagnosed with FA at age 8, I felt like a pumped-up boxer entering the ring. I was scared and sad while also motivated and hopeful. I would weave through complications, navigate appointments, and facilitate educational needs with a goal. I was a mom on a mission, and though I’d have moments of being overwhelmed or fatigued, they were limited periods.
As Amelia moved to middle school, things became more complicated. I’ve found myself struggling at times to get things done. This experience was new for me.
The long haul
As our lives have changed, so has our array of support services. New systems are arriving on the scene to shore up our daughter’s needs as well as our own.
The complication of leaving elementary school behind has brought me new growth opportunities as we navigate how Amelia will shuffle from room to room and use a locker and technology. My calendar has new reminders in it to follow up, touch base, or send an email to a contact person assisting Amelia. Now I not only have a to-do list, but I feel like I’m becoming the list.
I’m not begrudging the help; it’s essential. What I’m saying is that this labor is at a level for which no one can prepare you. The word “busy” doesn’t begin to capture the complexities because it’s more than what needs to be done. Caregiving comes with an emotional price tag that no one fully understands until they slip on the shoes.
The email to dispute a healthcare claim is more than just drafting an argument for why something should be covered. The note to school advocating for your child leaves your heart a bit raw. Sometimes I look at my email inbox full of communications from providers and feel tired. That’s further complicated by having a child who needs me to show up for her in all the ways that I can.
Moving from email to toothpaste
Getting ready isn’t simple when your body isn’t working as it should. Something as basic as brushing your teeth is not a simple task. Even with a special setup to make it easier and a toothpaste flavor one likes, it takes a lot of work. It’s hard to try to balance, even in a chair, to get those pearly whites clean. It becomes one more challenging thing to do.
Last week, Amelia was overly tired when getting ready for school. I offered a piggyback ride from bed to the bathroom, which she accepted with a sleepy smile. Pausing before the bathroom sink, I looked at her toothbrush and something snapped in me. In all of this effort, Amelia is still just a child. Where was the fun?
Holding Amelia on my back with one arm, I put the toothpaste on her brush. I then hung Amelia over my shoulder and said, “I dare you to brush your teeth like this.” The sound of giggling that came from her foamy mouth filled the bathroom as we turned a challenging task into a funny story. How we didn’t make a complete mess is a mystery. What we did do was change the feeling of that morning.
As we bounced out the door on our way to school, I reminded myself that life cannot just be about getting things done. Truthfully, I won’t be able to do it all. The to-do list is critical, but so are the moments in between. I took a breath, smiled at my beaming daughter’s face, and recalibrated.
Please take the opportunity today to inspire a full belly laugh in someone. It’ll only take a moment, but the memory can last a lifetime.
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
Terence O'Hanlon
Congratulations Elizabeth! Parents like you, friends like you, make the world a happier place for us all.
Elizabeth Hamilton
THANK YOU! I appreciate it
Karla M Wooten
I loved reading this as I can so relate! My son Josh was diagnosed at age 10 with FA. He is 27 now...wow that makes me feel old. The struggles have changed but like you I try hard not to let the to do list get the best of me. Some days I win and others...well they are harder. But overall our outlook is good and hopeful and that makes all of the difference!