How to Keep Going as a Caregiver When Time Seems Short
Welcome! Summer is not officially here yet, but the heat has definitely arrived in Alabama, where I live. The days are getting longer, and the craziness of the end of the school year is in sight.
It seems like time slows down just a bit once schedules open up and summer fun begins. So if you can, slow down. Pour yourself a glass of sweet tea, or your beverage of choice if you’re not from the South, and take some time to relax and enjoy the moment.
Receiving a diagnosis of a life-shortening neuromuscular disease like Friedreich’s ataxia (FA) can lead us to do one of two things: either cherish the moments we have or despair about the future.
When my son Noah was diagnosed with FA, my first reaction was to despair. We had been searching for answers for years, trying to figure out the cause of individual symptoms, and we were hopeful when we visited the pediatric neurologist. Surely, he could give Noah some medications and line up some therapy, and life would get back to normal.
Unfortunately, that is not what happened. As some of you have experienced firsthand, hearing that your loved one’s diagnosis does not have a cure, or even a treatment, is devastating. Your whole world seems to crumble in a moment. How can we possibly continue on when life seems so challenging and the future so bleak?
In her book “The Fall of Atlantis,” Marion Zimmer Bradley writes that, “The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination.”
Two people can walk down the same road and describe it in two completely different ways. It all depends on their perspective. Once I shifted my perspective, I began to have hope, even in the midst of uncertainty. I knew I couldn’t control the future, but I could enjoy the present, even with its challenges.
We recently celebrated Noah’s 21st birthday. As I hung balloons and a birthday banner, I paused to acknowledge that I didn’t know how many birthdays we’d get to spend with him. Each year, his FA symptoms progress a little more, and the reality of the disease is hard to ignore. This realization didn’t prevent us from celebrating; in fact, I treasured the day all the more. Each year with him has been a gift that I do not take for granted.
Life can be meaningful, whether it ends at age 17 or 70. As caregivers, we can strive to enjoy the moments we are given with our loved ones, even if they end far too soon. Honestly, we all long for a day when disease and death are no longer issues we have to face. For now, we hope and pray for a cure and savor the time we have been given.
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.