Heading Into an Uncharted Season With Friedreich’s Ataxia

This week marks the end of the school year for many schools in my area, and therefore, the beginning of summer.

I was recently chatting with a large group of friends, whose children are different ages and attend different schools, about everything we’ve survived during this unprecedentedly difficult school year. Between the COVID-19 pandemic, the recent U.S. presidential election, and ongoing civil unrest, we have certainly navigated some treacherous waters with our students.

Given the added pressure of trying to keep young children safe, happy, healthy, and educated without brainwashing, overprotecting, or scaring them, surviving this school year has felt like a herculean task.

So, as my friends and I make plans for the end of the school year and the beginning of summer, we are full of mixed emotions. We are losing the routine that we have established during weekdays. We are excited to enjoy endless hours of fun in the sun! Yet we are, once again, heading into uncharted waters. What will this summer look like?

All of my friends looked to me in that moment. I realized that to them, I was an expert of sorts on navigating uncharted waters.

Receiving the life-altering diagnosis of Friedreich’s ataxia (FA) as I was beginning the newlywed chapter of my life was terrifying. Not only would my life likely be shorter, but it was about to become much harder and more complicated as my FA progressed.

After a lot of doctors’ appointments, research, praying, and late-night talking, my husband and I decided to have kids despite my progressive prognosis. This introduced another life-altering variable into our lives with no guarantees about how it would affect my FA, or how my FA would affect my growing family.

Now that I am nearly eight years into life with a disability, six years into my parenting journey, and about two and a half years into my dependency on a mobility aid, I have collected a few pearls of wisdom. Hopefully the following can help those who are apprehensive about heading into unfamiliar seasons, especially during unprecedented times.

First, may you find comfort in the knowledge that you are not alone. No new student knows what to expect when they walk into school on the first day. No new graduate knows what to expect on their first venture into the “real world.” No medical intern knows what to expect on their first day of rounds. No new parents know what to fully expect when bringing home a child, no matter how well prepared we think we are. No employer, employee, shopper, business owner, student, patient, or house guest knows what to expect in the next week, month, or season of this pandemic.

We all just take things one day at a time, doing the best that we can with the information that we have and the choices that we make. You have been doing it your whole life, whether you realize it or not. There is no reason to lose confidence or hope now. Just keep moving forward as best as you can.

Second, try your hardest to be “in the moment.” Even if life looks different than what you had planned, being involved and soaking in experiences helps you not only build memories but build your confidence by learning your limits and abilities. Put your phone down, try to silence any worries that fill your head, and just be. Be with your people. Be with nature. Be with your own thoughts. Then you can enjoy the moment that you are in.

And finally, give grace. Allow yourself and those around you to make mistakes and get it right. Celebrate successes. Forgive and learn from mistakes. Let go of circumstances that are beyond your control and focus on the choices that you can make.

You can do hard, new, scary, and big things. Go forward with confidence and faith. Let’s make this summer a great one!

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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.