Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute.
I don’t want to have FA. I want to be “normal.”
Honestly, I often wish that I could be someone else; someone like the 2012 version of me who had never even heard of FA.
I wish I could pop up off the couch and grab a glass of water without worrying about how I’ll get there and back, or finding a cup with a lid so I don’t spill it.
I wish I could carry my daughter when she’s crying for Mommy. I wish I could scoop up my son and spin him around to celebrate his home run in T-ball. I wish I could be the active, silly, adventurous mom I always pictured myself as.
I wish I could go out for margaritas with my friends and not worry about being unable to walk to my car after. I want to go to the movies and not worry about navigating the stairs in the dark.
I yearn to pick up my kids from school and appear like the mom who’s got it all together, not the hot mess whom 20 people offer to help. (Though, don’t get me wrong, I appreciate the help more than a hurried “thank you” can convey.)
I don’t always want to be brave and inspiring. I don’t want to be pitied. Sometimes, I would rather be envied.
I don’t want to have to be exceptionally strong just to make it through the day. I don’t want to have to think about every single step I take.
I don’t want to be reminded of my progression when I see or hear myself in videos playing with my kids. I don’t want “that’s Mommy’s walker” to be one of the first phrases out of my 22-month-old daughter’s mouth.