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.
A big part of my experience as a late-onset Friedreich’s ataxia (FA) patient is the disease’s impact on my role as a mom.
My life is action-packed from the minute my busy 6-year-old son and 4-year-old daughter wake up until the minute they go to sleep. Toddler life doesn’t pause for fatigue, injury, or the blues. Baseball, swimming, gymnastics, carpool schedules, play dates, and Sunday school persist no matter what FA has me feeling that day. The hours after my kids go to bed are spent cleaning up from that day and preparing for the next.
For better or worse, on good days and bad, my responsibilities as a mom trump the desire to lie around pouting about my disability. But FA still factors into my participation — massively. It dictates most of my life, especially the daily activities of motherhood.
FA can be a heavy burden to carry and a huge obstacle to overcome. I often feel like I miss out on so much because I am stuck on the sidelines with my walker or in my wheelchair. I’m not usually able to bop around socializing or helping the way many of my friends do, considering the terrain, my limitations, and my abilities. Therefore, I often take on a spectator role.
Feeling like a spectator in my life has pros and cons. I have the opportunity to sit back and soak in the atmosphere, sights, sounds, feelings, and action. Instead of having dozens of little conversations with lots of people, I have long conversations with a handful of people. I’m not always able to grab things for my kids or take them to the restroom, so they have to rely on other people. I’m unable to pitch in and help, and more often than not, helping me means more work for those around me.
It’s frustrating that my disability forces me to be a spectator when I would rather be an active participant, like the other “normal,” able-bodied people. But because being a mom with Friedreich’s ataxia is my reality, and my disability will continue to affect my ability to participate, I can either grow more resentful or adjust my perspective.
A dear friend of mine helped me make my choice the other day. She told me that in scrolling through my social media, she became jealous of my ability to simply be present, witness the action, and capture the moment, either through photos or journaling funny kid quotes. She went on to explain that when she’s at a friend’s house or her son’s baseball game, she’s so busy running around helping that she misses the whole reason she was there.
I sarcastically responded, “No one asks me to do things because I can’t do most of them. So, yes, I get to watch all of the action instead of being a part of it.”
She reminded me that because of that, I have what everyone is always striving for: the ability to soak in the moment.
I get so wrapped up in my negative feelings about my forced spectator point of view that I forget the positives. I might not get to bop around and impress other moms with my super-mom abilities, but I get to have my daughter sit in my lap as we talk to our friends, and share in my son’s enthusiasm when he asks if I saw his awesome hit.
Yes, I am forced to ask for help, or just sit and watch more often than not, but what a blessing that can be if I simply adjust my perspective. Because of my disability, I am able to be an active and passionate spectator who experiences the big moments, the little moments, and everything in between.