Thanks to my village, I don’t have to navigate FA life alone

I’m frequently asked how I handle the relentless progression of Friedreich’s ataxia (FA) with a smile on my face. My answer is simple: I don’t do it on my own.

Without the support of all the wonderful people in my life, I’d still be that scared and confused statue who was terrified of the future after my FA diagnosis in 2013. Each member of my village has played a different and specific role in helping me navigate life with FA.

A few months after my diagnosis, once I’d decided that my life wasn’t over, my husband and I chose to start a family. Two years after welcoming our firstborn, we grew our family again. Our son is now 10 and our daughter is 7.

As my children have grown and their abilities, personalities, and tendencies have developed, their roles have shifted seasonally. But the one constant is that they give me purpose. Being “Mom” means that I don’t get days off. No matter what I’m feeling or experiencing, I must meet their needs. Even when I’m not able to do so — whether because I’m sick, injured, across the country for a clinical trial, or reeling from a new adaptation — I have to ensure that there are people who can take them to school, feed them, make them feel safe and loved at bedtime, and more.

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While that responsibility can be daunting, I’m thankful for the predictability of meeting their needs. Having them live under our roof and depend on us for everything is temporary in the spectrum of their lives. I know that the work of a parent is never done, but the need to simultaneously be an adviser, chauffeur, chef, financier, housekeeper, tutor, and more is fleeting.

Having to pull myself up by my bootstraps and take care of my children every day is a welcome distraction from the weight of life with FA, which can easily absorb me.

My precious husband, Kyle, meets so many of my needs seamlessly. I don’t know how he does it. Whether he’s listening to me complain about FA, hugging me while I cry it out, offering solutions, cursing FA with me, asking how he can help, distracting me with humor, asking for my help solving a problem, or giving me space, he always seems to know what the moment calls for. He keeps me moving forward, for which I’m endlessly grateful.

My mom is my logistical wizard and sounding board. She can talk me off a ledge or help me find a logical solution to any problem I face. She’s wise and unafraid of obstacles, and she helps me feel empowered.

My dad is dependable, level-headed, optimistic, and has an uncanny knack for providing the perfect perspective for any situation. That’s why he’s always my first call during and after a crisis.

My friends who make up the group text aptly named “The Village” are the most special group of women in existence, in my humble opinion. We never hesitate to share what’s going on in our lives, and I know they will cheer me on wholeheartedly, with no complicated jealousy or judgment, just like I do for them. I also know they’ll always give me strong advice, ask the hard questions, and cry with me. They are the friends that everyone deserves, in good times and bad.

On Jan. 1, I started a plan to read the entire Bible chronologically throughout the year. When I began reading the Book of Job, I held my breath. Job is an account of a very fortunate, righteous man who loses everything, including his children, his health, and his wealth. After these devastating losses, his friends rally to his side. They sit with him for seven days and nights in silent support. Then they start to talk and give poor counsel peppered with logical points. I often found myself thinking, “Job needs my village.”

All of this is to say that you don’t need to handle FA on your own. If your current village isn’t helping you, find a new one!

One of my favorite radio stations often says, “The world is full of nice people. If you can’t find one, be one!” I hope and pray that every member of the FA community finds nice people in their life.

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.