The arrival of summer means adapting to new routines in my life with FA
This more relaxed, yet full-time schedule, is both joyful and fulfilling to me
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When you have school-age kids, summer can be quite an adventure. Establishing sustainable and achievable routines that will serve me and my Friedreich’s ataxia (FA) is a priority when summer arrives to my home each year.
Since we no longer have homework or alarm clocks to mind for a few months, bedtime is more fluid; we get to to sleep in and wake up slowly. My downtime changes, too, and I’m pretty much on parenting duty from the minute I wake up until we all fall asleep at night.
This more relaxed, yet full-time schedule, is both joyful and fulfilling to me, but accomplishing all the things I can usually take care of while my kids are at school — laundry, cleaning, exercising, and more — becomes more challenging when they’re home all day. Everything usually gets done, but it just looks a little different.
It’s sort of what living with FA is like. I just have to be creative to find a way to balance everything, and the adaptations may make those “means to an end” look different, but that’s OK! It just requires being a bit more intentional and deliberate, and getting help from others.
Rejoicing and being glad
Even as summer changes my routines, the season also means making plans for going away. That requires a lot of extra FA-centered planning so that I can safely participate in activities. We’re fortunate that this summer is jam-packed with camping, a trip to Yellowstone and the Grand Tetons, a trip to Turks and Caicos, and a return to our favorite Texas beach.
Although all that activity can seem daunting, I’ve found that it’s good for me. Not only do I learn things about myself, my abilities, and my limitations every time I try something new, but I also get to see more of the world through the eyes of my favorite people: my family.
I want to share my personal challenge for this summer in the hopes that you might join me in this summer-with-FA mindset. Don’t stress too much about your to-do list. Accept help, and extend grace to yourself and those around you. Learn and grow from your experiences. Let them shape you into the person you wish to be in the next season of your life. And most importantly, have fun!
“This is the day the Lord has made. We will rejoice and be glad in it.” — Psalm 118:24
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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