How Friedreich’s Ataxia Redefined My Faith

I grew up in a church-going family that was always involved in ministry. We spent at least three days a week at church. I had a sound knowledge of Christianity, the Bible, and what it meant to be a Christ follower. I felt invincible when I was close to God. I walked with purpose through my blessed life.

When I was 25, I was diagnosed with Friedreich’s ataxia. To say I was upset is an understatement. I was so mad at God. I felt cheated, lied to, fooled, and abandoned. How could God — my God who I had praised, worshiped, proclaimed, confided in, trusted, adored, and loved my whole life — do this to me?

The first Sunday after my diagnosis, my husband Kyle and I went to church. When we were walking in, I felt like everyone could tell I was “diseased.” I remember passing complete strangers and thinking, “Oh man, they know.”

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I also felt like a fraud. I had been so mean to God that week. I was angry at Him for giving me FA. I blamed Him for changing my perfect story into one of disease and hardship. During the worship portion of church, I looked around at everyone praising His goodness, mercy, power, and love. I wanted to scream, “I’ve sung this song and made these professions. And look what He gave me in return — FA! You don’t know what you’re doing.”

That’s when I realized that I was not ready to give my problems to God. I wasn’t ready to forgive Him and find joy beyond the diagnosis. I wanted to stay mad at Him because, at the time, that’s all that made sense.

My friends and family would say, “We are praying for you.” I thought, “OK, thanks, but that doesn’t help. I still have FA and you’re praying to the God who gave me FA?” But I accepted their sentiments with a smile. I took comfort in the fact that at least someone was talking to God about my FA, because I sure wasn’t.

FA was my first real-life struggle; the first time my feet were really held to the flames and my faith tested. And I responded with anger. I fled from the God who had been my safe harbor and wise counsel for my entire life. Instead of talking to Him, I blamed and ignored Him.

Then I desperately needed Him. Kyle and I had the “kid discussion.” Should we or shouldn’t we? I didn’t know what the right answer was because my future was so unpredictable.

For the first time in five months, I prayed. I said, “OK, God, you gave me FA. What now? Obviously, you have a path for my life that I had no part in planning. Give me a clear sign that we are or aren’t meant to have kids.”

The next week, we got Kyle’s test results back that he was not a carrier of the FA gene, meaning that without a doubt, our kids would not have FA. So we just decided to go for it. We got pregnant that month.

For me, it took a BIG thing like pregnancy to come back to God. I had been going to church, thanking people for their prayers, and occasionally trying to pray myself. But until I heard my son’s heartbeat during that first ultrasound, I was lost. When I realized that the same God who gave me this broken body was capable of using that very same body to grow a perfect human life, my faith was restored.

I have learned so much in the last five years since my diagnosis. I have discovered strength I never knew I had, built positive friendships, and grown fulfilling relationships with family. But most of all, I have discovered my purpose in life is to be the best person I can be, even with FA.

Becoming a mom saved me.

One day, my son came home from preschool singing, “I like my eyes, I like my face, I like the way God made me.” His sweet, childlike faith stopped me in my tracks. He made everything seem easy. “God made me.” How convicting. How challenging. Yet through the eyes of my sweet boy, it’s all so simple. “I like the way God made me.” What a better place this world would be if we all thought like that.

I traded my heavy heart for childlike faith and found pure joy again. I choose to focus on all of the beautiful, joy-filled blessings God has given me every single day. Life with God is not immune to difficulties, but a heart full of hope makes life a lot better. And it’s OK to be mad at God every now and then; He can take it. Just remember to give Him a chance to fix it, too.

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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.