Finding Ways to Celebrate, Even When Life Is Challenging

Hello, friends, old and new! Spring is coming to a close, and the days are getting longer and hotter down here in Alabama. I hope that you have some time today to reflect and be proud of how far you have come. You are worth celebrating, and the world would not be the same without you in it!

I have always loved a good celebration. Birthdays, holidays, you name it, I love any reason to decorate and pull out the costumes.

When my son Noah was diagnosed with Friedreich’s ataxia (FA) a few years back, life as I knew it changed in a moment. At first, his diagnosis overwhelmed me and made it hard to keep going day to day. But after a little time and a shift in perspective, I realized that each day is worth celebrating.

One of my inspirations over the past few years has been a beautiful lady named Katherine Wolf. She and her husband, Jay, have a difficult story of loss, as Katherine experienced a life-altering stroke in her 20s.

In their latest book, “Suffer Strong,” which I highly recommend, they share about redefining celebration. In Chapter 3, “Joyful Rebellion,” Katherine writes:

“Jay and I no longer celebrate desired outcomes that may or may not happen in the way we envision. But we do celebrate because, if we wait, we just might wait until it’s too late to celebrate at all. Celebration can be an act of worship and an act of hope and perhaps, in a way, an act of joyful rebellion against fear.”

FA is terrifying to me as a mom because it has the ability to shorten my son’s life, and it definitely has taken away many of his abilities. I can choose to live each day in fear of the future, or I can find beauty in this moment. Each day holds some reason to celebrate.

What celebration looks like for you may be different than what it looks like for me. A few examples for our family have been taking a trip to Hawaii (thanks, Make-A-Wish!), going on bike rides, and attending a baseball game. Some celebrations may be once-in-a-lifetime events, and others may be activities that can be enjoyed on a regular basis. Find joy in what you can do instead of focusing on what you can’t!

None of us, regardless of any diagnosis, know when our last day will be, so we have to live each day as if it could be our last. Celebrate, spread joy and hope, and be who I believe you were created to be — a rebel against fear!

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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.