I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
When Friedreich’s ataxia (FA) came into my life in 2013, I thought all the hopes and dreams I’d held would be wiped out. I planned on being a fun and adventurous wife and, God-willing, a mother one day. Instead, I had to face the harsh reality that I would live a progressively disabled life that would slowly break the hearts of my friends and family.
But I took a season to mourn, to adjust and refocus, and to learn everything I could about FA and my specific prognosis. And then my husband, Kyle, and I decided to start a family.
The wonderful start to that family, my dear son, Brooks, just turned 7. I’ve been so overwhelmed with love and gratitude for his role in my life that I couldn’t let this birthday pass without sharing a tribute to my journey through motherhood.
Brooks fulfilled a lifelong dream that I thought FA had taken from me. Seven years ago, this beautiful, wise, observant, compassionate, enthusiastic, strong-willed blessing came into the world and changed my life. Becoming Brooks’ mom gave my life a purpose again — a purpose that I feared I would never get to realize because of FA — and allowed me to define myself as a “mom,” instead of just a patient. Yes, I’ve lived with FA for eight years, but the last seven of them have been joyful, rather than tragic. I am so thankful for that.
And being both a mom and an FA patient has taught me a few things about life that I think apply to most situations — for both parent and patients.
Motherhood with FA meant redefining me
The first thing I’ve learned is that it’s never too late to redefine your vision. I thought I would be a mom who was always in the middle of the action, playing with my kids like I was a kid myself. But since I can’t do that, I had to think of another way to participate, so instead I became my kids’ biggest cheerleader. I am always there to wipe their tears, offer advice, sympathize, and help however I can. I may not be able to physically be a part of the action with them the way I wanted to be, but that doesn’t mean I can’t be a part of their experience.
I’ve also learned that the things that seem insurmountable aren’t, if I focus on one task at a time. When I thought about being a “disabled mom,” my mind jumped immediately to, “How will I dance with my son at his wedding?” But we are a ways off from needing to clear that hurdle, and there will be plenty of other bridges to cross before then.
I am learning as I go, tackling motherhood task by task, phase by phase, and adjusting and adapting to my disability with each new stage of its progression. Setting manageable goals has helped me be the best mom and patient I can be.
Here’s my other realization: While we tend to be our own worst critics — moms are incredibly guilty of this — chances are that we are doing a much better job in life than we think. Those of us battling a disability tend to get ourselves worked up, but it’s always a good idea to take a deep breath, step back to gain some perspective, and then take an honest look at the situation before moving forward with a more realistic plan. I think talking things through with friends and advisers also helps.
It’s difficult for me to realize that there was a time when I had been prepared to let FA take away my dreams just because they suddenly seemed messy, hard, and scary. But that’s life, even without FA!
I am so thankful for the people and events that shaped me into who I was before FA, and for those who have walked beside me since. Motherhood hasn’t been easy, nor has my disability. In a way, one has helped make the other. I don’t know motherhood without FA, and I don’t know FA without motherhood.
It is messy and wonderful all at the same time.