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’ve been living with Friedreich’s ataxia (FA) since 2013, and I’ve been a mom since 2014.
FA is progressively degenerative, and I’ve slowly become more disabled as my children have grown up. I began using a walker full time in February 2019, when my son, Brooks, was 4 and my daughter, Collins, was 1.
Brooks is now 9 and remembers me before I used my walker, while Collins, now 7, doesn’t. It creates an interesting dynamic with their levels of acceptance, compassion, and curiosity.
The other day, Collins told me that a classmate asked her why I use a walker, which prompted her to ask me, “I know that your legs don’t work very well, but what happened to them that made them that way?”
I wanted time to be intentional with my choice of words, so I just said, “Wow, sweetie, that’s such a great question! I’m happy to sit down with you and Brooks to chat about it very soon, and I’d be happy to talk with your class one day to explain things and answer questions.”
I’m so thankful that she accepted this temporary answer so that I could prepare what to say.
Explaining FA
Over the long Labor Day weekend, my family and I drove four hours to the beach. It was the perfect opportunity to chat, so I prepared a speech of sorts. Here is what I said:
We are all made up of what is called DNA. DNA is God’s perfect design. It’s itty-bitty stuff in our bodies that tells our bodies what to do: what color of hair we have, how tall we are, what foods taste good to us, and more!Mommy’s DNA makes something called Friedreich’s ataxia, or FA. FA makes my body less coordinated over time. It makes my balance worse, my voice a little slower, and causes my arms to move a little funky. For now, I use a walker to help keep me safe when I walk.
You two are used to seeing Mommy with a walker, but a lot of people aren’t, and it’s perfectly fine if they are curious about why I use a walker or wheelchair. You know me. You know that even though my body doesn’t work the way I wish it would, I still find joy in my life! FA only affects my body and is not what makes me who I am.
FA is not what I would have chosen for my life and it makes me sad sometimes. But the good news is that I know God loves me and uses everything to work for the good of those who love him and are called according to his purposes. I believe that God uses my FA to shine his light and show that even when things are hard, he is good and gives his children good things. You two, Daddy, your grandparents, my friends, our church, our pets, your abilities, and your love for all things active are all good things that God has blessed me with!
So the next time a friend asks, “Why does your mom use a walker?” you can tell them, “She uses a walker to stay safe because she needs help with balance. That’s just part of the way God made her. But she is happy and healthy!”
After that, they had a few questions, such as: “What does FA stand for again?”; “How did doctors know you had FA?”; and “Will I have FA when I grow up?” This sparked an interesting conversation I’m so thankful we had. I’ve been dreading putting a name to my disabilities for my children, but I think I provided them with enough information to satisfy their curiosity without overwhelming them or causing them to fear for my future.
I’m sure this will be the first of many conversations about FA in my family, and I know I can do this.
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” — Romans 8:28
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