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.
Historically, Aug. 19 is a hard day for me. That’s the day in 2013 when I was blindsided by a Friedreich’s ataxia (FA) diagnosis. My emotional journey of advocating for myself to find answers to seemingly random neurological symptoms had reached a difficult, unexpected, and dramatic turning point.
I was a 25-year-old newlywed with a world of possibilities ahead of her, who had suddenly been handed a degenerative and terminal neurological diagnosis. Now what?
Well, the answer depends on when you asked me that question. I spent my diagnosis day in agonizing tears, convinced my life was over. My husband, Kyle, and I were on the verge of starting a family. I spent the better part of a month convincing myself that having babies would be selfish because I’d be leaving Kyle a single father and widower by age 35.
After an emotional search for information and a more accurate prognosis, we decided to keep living the life that we wanted, and for us, that meant having kids. We welcomed our son, Brooks, in 2014, and our daughter, Collins, in 2017.
But every year, Aug. 19 haunts my calendar. It reminds me that time relentlessly marches on, that my FA is relentlessly progressing, and that what happened to my body was completely beyond my control.
Each year since diagnosis, I handled the anniversary differently. Some years, I celebrated all that I had accomplished despite my physical disabilities by spending the day with friends. Other years, I tried to ignore the day after doing my duty to raise awareness for FA by sharing a few words on social media.
The last few years, I attempted to shut down my emotions and let the day pass with as little fanfare and acknowledgment as possible, because it was frankly too difficult to pull myself together and be the mom, wife, friend, and daughter I needed to be, starting on Aug. 20.
This year, however, that wasn’t an option. Aug. 19 was a special day because my precious Brooks started first grade. I wanted to allow myself to feel all that comes along with my son’s milestone, which left the door open for my feelings about FA as well.
I kept thinking back to 2013, and how I spent that day convincing myself that my life was all but over. I was sure that having kids was an impossibility. I can’t believe that in eight years, I went from thinking my life was over to sending my miraculous and perfectly healthy firstborn to first grade.
How did I do that? I did it imperfectly and ungracefully. Quite simply, I did it by never giving up.
I fought to overcome obstacles to become a stay-at-home mom to two healthy, energetic, strong-willed, and funny kids that remind me daily that life is precious and not all about FA. I threw myself into loving my amazing, supportive, kind, hilarious, and generous husband to the best of my ability, and thank God daily for this partner in life. I do everything in my power to love my friends and family and treat them like the treasures they are.
I learned to extend myself and others copious amounts of grace daily. I have to roll with the punches: adapt, adapt, adapt, then adapt again. I humbly and constantly depend on assistance while graciously accepting support, pity, curiosity, help, encouragement, ignorance, and kindness. I regularly fail, fall, and break, just to get up and try again. And I desperately rely on peace and strength from God every minute of every day.
In the last eight years with FA, I have grown more than I ever thought possible. I regularly laugh harder, cry harder, love harder, and pray harder than I ever thought possible. In short, I have basically redefined my idea of “possible.” And if I can do it, then you certainly can, too.