My message for other parents this National ‘FAmily’ Caregivers Month

“You can’t miss us. We have a huge metal ramp attached to the front porch,” I explained while giving directions to our home recently. That particular line made me both chuckle and sigh.

Getting the ramp installed was emotionally challenging. The former landscaping, once vibrant with spring bulbs and cheerful mums, has given way to long metal planks that now provide necessary access to our home. When our 13-year-old daughter, Amelia, was diagnosed with Friedreich’s ataxia (FA) at 8 years old, I nervously tried to figure out how long it would be until she’d need a wheelchair. That day is now here.

The front of our house now reflects much of what my life feels like with FA. Things have changed in ways I never expected when I first held her in my arms. Old photos don’t just summon the longing a mother feels knowing her children are growing up, but the heartache of seeing abilities gone and steps no longer taken by legs that often fail to work.

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I now see our house not just as a home. It’s a structure I constantly adapt and manipulate to meet our daughter’s mobility needs. My retirement account is no longer something I review with hopes for our golden years. Instead, I wonder if it will be sufficient to provide for the care Amelia might need or to cover the cost of any future gene therapy (fingers crossed) if health insurance denies the coverage.

Concerns about the cost of athletic wear have shifted from expensive shoes or uniforms to sports-specific wheelchairs, which cost more than my current vehicle is worth. I’ve sat in conversations with parents whose children aren’t impacted by a disease like FA. While they discuss what I imagine to be normal, everyday activities, it feels to me as though they’re speaking another language. I don’t feel like I fit in. Trying to explain what goes into my child’s day-to-day care can be challenging, so I often fall quiet.

To my fellow caregivers

This is why I prioritize attending Friedreich’s Ataxia Research Alliance (FARA)-sponsored events, and why I invest time into connecting with other FA parents who understand the complexities of my life. To those outside our community, the phrase “I think my daughter’s starting to slur her words” fails to convey its true weight and meaning. But I don’t have to explain the significance to another FA caregiver; they just get it.

As I looked around the room last month at the annual FA Symposium, hosted by FARA, I saw so many faces that I’ve grown to know and care about. I felt safe in that space, where this journey is known and lived by those around me. Where the metal ramp, the fear of my inadequacies, the struggles to balance it all, and the slurring of speech don’t have to be explained; they’re just understood.

This National Family Caregivers Month, I know I’ll see the same memes on social media and hear the same feedback that I do every year. From the reminders to practice self-care — which is easy to say and so hard to find the support to do — to the notices that I am important, I often feel like this month’s communications miss the mark for me.

Often, I want to celebrate the awareness month by pushing systems to invest in making their processes and paperwork more manageable. Though that’s something I still want, this year, I have a different message for anyone reading this.

If you feel tired, overwhelmed, hopeful, lost, found, angry, sad, or joyful in this journey, just know you do not travel it alone — even if it feels that way. If we ever have the opportunity to connect, know that I will work to see you completely, with all the complexities that this journey brings for you.

To all those dedicated caregivers out there, Happy National “FAmily” Caregivers Month.

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.