As Parents and Caregivers, We Can Find Beauty in Life With FA
Welcome back! I wish we could have this conversation face-to-face over a cup of coffee. For now, we’ll have to settle for this virtual space, where we can connect in a different, but hopefully meaningful, way.
As you’ve probably done, I’ve often said in the last year, “I can’t wait for life to get back to normal.”
Last spring, our daily routines and many of our relationships were taken away in a moment. At the time, we probably had heard about the novel coronavirus circulating the world, but we likely had no idea just how much it would soon affect our lives. A year later, we all just want to go back to simpler times, before there was so much sickness and isolation in the world.
If, like me, you have a loved one with a degenerative disease like Friedreich’s ataxia (FA), I’ll bet you have longed for past days. Those easier times when you didn’t have to think about assistive devices, accessibility, and never-ending appointments. The good old days when thoughts about your child growing up didn’t seem quite so scary.
I believe that to fully live in the moment, we have to grieve the hard things of the past. Along those lines, a quote by pastor and author John Piper resonates with me: “Occasionally, weep deeply over the life that you hoped would be. Grieve the losses. Feel the pain. Then wash your face, trust God, and embrace the life that he’s given you.”
You may put your trust in someone or something different than I do, but I think the sentiment is still true. As parents of kids with FA, none of us chose this life for them. We grieve when we see them struggle to walk, speak, and do things they used to do with ease. This was never what we imagined their lives would look like.
So, we grieve, and we should. Disease is horrible. As we have witnessed firsthand, it does horrible things to the people we love. It takes away their abilities, and sometimes even their dreams.
But over time, we parents get back up and keep going. If you’re a parent in a similar situation, you might wonder how you’ll manage. Yet somehow, you usually find a way, and I do, too. We keep fighting the constant battles that FA throws at us. And just when we become accustomed to our new “normal,” progression leaves us scrambling again.
We find ways to embrace the life we’ve been given. It certainly doesn’t look the way we thought it would, but each day we catch little glimpses of beauty — a genuine smile, a hug, a simple thanks — and are encouraged to keep moving forward.
Please don’t get me wrong — if I could rid the world of FA, I would in a minute! But from this abnormal life, I have seen some beautiful things bloom, such as new friendships, destinations, and experiences.
We need to let ourselves feel our feelings. We shouldn’t immediately try to spin every situation into a positive one. Rather, we should take the time to grieve and to process things. And then we do it all over again.
These situations are difficult, but they have the potential to grow us into people we wouldn’t be under normal circumstances — beautiful people with stories to tell and empathy to share with others traveling hard paths as well.
If you can relate to this, please remember that life may feel far from normal, but it still can be filled with meaningful moments. You are beautiful and loved! Keep blossoming into who you were meant to be.
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.
Katie, I have a question and was looking for some type of forum to write questions...Both of my brothers have FA. One of them passed in 2018 due to other health issues...anyway, I help my other brother. His biggest issue now is getting on and off the toilet and he wants to do it independently. Do you have any advice on that or can you direct me to a forum? Thank you SO much.