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.
As Mother’s Day approaches, I can’t help but pause to reflect on what this holiday means to me.
I love celebrating my mother. Not only did she give me life, she gave me a wonderful life. She is a fundamental member of the village I need to get through my days. More than that, she is my best friend and the person I turn to for advice.
For the past seven years, I have also been blessed to be celebrated as a mother myself. I am Mom to two beautiful, healthy, smart, and funny children. Their sweet homemade cards and crafts make me cry happy tears every year. Plus, my dear husband usually spoils me with kind and generous gifts.
Unfortunately, amid all of the celebratory love, Mother’s Day, like most holidays, stirs up mixed emotions for me.
Mother’s Day is especially complex because I am the focus. I have some deep, dark issues that make me feel like I’m not necessarily deserving of the love and admiration that is showered upon me. I can’t help but spend a few moments each Mother’s Day in an emotional state, reconciling the mother I am with the mother I thought I would be.
My disease, Friedreich’s ataxia (FA), has taken so much of who I am out of my control. I have written endlessly about how I am unable to do the things I thought I would do as a mother — such as running, playing, and participating in sports with my children — because of my physical disabilities.
But FA has affected more than just my physical abilities; it has changed me to my core, which has altered my approach to motherhood. For better or worse, FA has impacted who I am as a mother in ways I never anticipated.
Mom guilt is pretty common. We make thousands of decisions a day, big and small, and we don’t know what the consequences will be.
We make most of these decisions on the fly, all while processing questions like, “Am I spending enough time with my kids? Am I teaching them enough? Did I handle that situation correctly, or did I make things worse? Am I unintentionally ruining their future? Am I the right mom for this child?”
Add the complexity of being a disabled mom, and it’s overwhelming. “What are my children missing out on because of my disability, and how will it affect them in the long run?” I often wonder.
While it’s impossible to predict the lasting influence of my parenting, I try my hardest to be intentional about the choices I make concerning my family.
Because of my limited ability to be part of the action, I have become a dedicated student of my children. I study the way they approach things, react to adversity, rise to challenges, process criticism, and digest praise. I do my best to put these observations to use and help them grow into the best, most mature, and most independent versions of themselves.
I am proud of the impact I’ve had in my role as mom in shaping who they are and who they are becoming, but that doesn’t take away from the guilt and heartache of all the other ways I am unable to be there for them.
This year, instead of looking at myself as a mom through my FA-tainted perspective, I am going to focus on the mom that my kids see. I will strive to enjoy my children’s celebrations of the mother that I am, instead of pondering how much better their lives would be if I didn’t have FA. I will try to lay the ideas in my head to rest, and appreciate reality.
For better or worse, I am the only mom that my kids have. I need to be gracious and let them celebrate what they love about me, even if those aren’t the things that I love about me. They don’t see the shortcomings that my disease caused. They don’t see the picture of me as a mom that I had formed before FA entered my life. My precious children just see Mom, and I love them for that.
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