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.
I fell head over heels in love with my husband, Kyle, when I was 16 years old. By 18, I knew I would marry him. Then it came time for college, and though we didn’t go to the same university, our schools were only 20 minutes apart. We continued dating throughout college and made plans to marry soon after we graduated.
Because we got married so young, we planned on having a long honeymoon period. We hoped to enjoy married life for five years. Once we reached our mid-20s, we’d start a family and live our American dream. In other words, we had everything pretty well mapped out, and for a while, it seemed like God and the universe had conspired to let us follow that blissful plan.
What we didn’t account for was our world turning upside down when I was diagnosed with Friedreich’s ataxia (FA) at the age of 25, right when we were thinking about starting a family.
As I learned more about my disease and the future it had in store for me, the idea of my future children inheriting this hardship from me became unbearable. I was thankful for the life I had led so far, but I knew that my future now looked so different from what I had in mind. The idea of passing along something as challenging as FA to a baby was unfathomable to me.
We got Kyle tested for the FA genes and discovered that he is not a carrier, meaning that our kids might be carriers, but would never develop FA.
We now have a 7-year-old son and a 4-year-old daughter, both perfectly healthy. The older my kids get, the more I realize what a perfect blend they are of Kyle and me. It is equally funny, terrifying, and touching to see bits of ourselves mixed in with the beautifully unique people they are becoming.
This recognition has made me take note of what they are getting from me, both by nature and nurture. While I thank God every single day that my kids didn’t inherit FA, I do hope they inherit many aspects of my life with the condition.
I hope they inherit the resilience life with FA has forced me to develop and display. I hope they inherit my adaptability and understand that things don’t have to be perfect to be wonderful. I pray they inherit the knowledge that they are perfect just the way they are.
I hope they stand confidently in who they are and always do their best. And I hope they measure their success by reflecting on their efforts in the circumstances they experienced instead of comparing their lives with others.
I am thankful they won’t inherit my physical struggles, but I pray that my response to my struggles is a legacy they are proud to inherit. I hope they will learn from my countless mistakes, as well as my occasional triumphs.
Last, but certainly not least, I hope they inherit Kyle’s compassion, work ethic, selfless nature, humor, and thoughtfulness.
FA has brought so much that is unexpected into our lives, and we are all learning how to handle what I have physically inherited. I hope the impact FA has had on my life will allow my family and me to impact the world positively, so that those who inherit it after us are well equipped to navigate this crazy, beautiful life.
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