Pros and Cons of Mothering with Friedreich’s Ataxia

I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful job of making me feel loved and cherished.

Annual celebratory events tend to turn me introspective. All weekend, I was thinking about how living with a progressively degenerative disease like Friedreich’s ataxia (FA) has shaped my motherhood journey. My disease has changed who I am, so it has changed the kind of mom I once thought I would be, for better and worse.

Here are the positive changes FA has had on my role as a mother:

• I am hyperaware of the struggles my kids face, and the ones they will face. As an FA patient, I have been burdened with more than my fair share of struggle, yet I am becoming stronger every day. I am determined to equip my kids to handle any situation that could come their way. I want them to know the value of struggle, grow through it, and feel proud of the outcome.
• My kids don’t see disability the way most of the world does. To them, I am not “that lady with the walker that talks differently.” I am just “Mom.” My kids see the people behind the disability. They see the person who happens to use a wheelchair versus the “disabled person.” I am so proud of their hearts and open minds that see people first, differences second.
• I am more intentional about my time with my kids. With chronic fatigue being my main symptom, I don’t have an abundance of energy to entertain them or keep up with them. I have to be smart in my modifications, and conserve where I can. When I am having a good day, we go on adventures, craft, cook together, have dance parties, etc. On days where my fatigue gets the better of me, we snuggle and read books, color, watch movies, and play board games.
• I am so proud of my body. I am proud that it safely carried two perfectly healthy babies to term, delivered them into the world, provided nourishment for them, and healed completely. I am proud of what my body has let me do in this new role of mothering through a chronic illness, and I am thankful that it withstands me pushing my limits daily.

Here are the negative changes FA has had on my role as a mother:

• I am not able to do a lot of the things I always dreamed of doing, like running after them when teaching how to ride a bike or scooping them off the playground when they fall. I don’t get to run through puddles holding their hands, or show off my old high school cheerleading tricks. These frustrating shortcomings never get easier.
• My disease is relentlessly progressive. My kids see me exercise, eat well, take medicine and vitamins, go to physical therapy and countless doctors’ appointments — basically all of the things we teach our kids to do to “get better.” However, I am not “getting better.” Despite all my efforts, my many symptoms are progressing. I am getting worse. That is a confusing message to comprehend, especially for toddler minds.
• I worry endlessly about how my FA will affect their futures. Will they be bullied in school for having the “disabled mom?” Will they lose faith in doctors and clean living since “that didn’t help Mom?” Will they resent me for the things they missed out on because of my limitations? Will their hearts harden and become callused by the unfairness of disease?
• My darkest insecurity is that I’m not enough for them and that they deserve a better, normal, healthier mom. That they would be better off with a mom who can do all of the things FA doesn’t allow me to do.

The beautiful thing about my kids is how they humble me, constantly show me that my life is about more than FA and that I am capable of a fuller life than I imagined, despite my disability. I don’t appreciate the countless facets of motherhood that FA has changed from me, but I appreciate the strong, kind, independent, compassionate, tolerant, observant, and helpful kids FA is helping me raise.

Parenting is emotional no matter your health, so it’s no surprise that parenting with a chronic illness is a roller coaster. My faith confirms that I am exactly the right mother for my kids.

In the words of Kyle, my husband, “Our kids see how strong a mother can be in a world when so much has been thrown at her.”

For more on my point of view on mothering, watch this video.

***

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.