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 grew up in Katy, Texas, and in keeping with the Texan stereotype, I was a cheerleader who married my high school sweetheart, who also happened to be the captain of the football team. Together, we have a 7-year-old son, Brooks, and a 5-year-old daughter, Collins. We are raising our family in Austin, Texas.
Austin isn’t a small town by any means, but sports are an important part of our community — especially football. And now that September is here, football season has officially begun.
I love the season and almost everything that comes with it. I love seeing proud parents cheer on their children. I love seeing sweet friends root for their classmates. I love hearing the cheers of cheerleaders, the beats from the marching band, the music from the drill teams, and the shouts of encouragement between teammates.
My children go to a private school that accommodates kindergarteners through seniors in high school. We cherish this community and look forward to being a part of it for 13 more years. Last Friday, we went to the football game and watched our team begin the season with a convincing win. Brooks was busy running around with his other second-grade friends, so I sat and enjoyed the game with Collins and my husband, Kyle. Watching Collins, who is now in kindergarten, fall in love with the sights and sounds of Friday night football stirred up so many emotions.
She wants to be a cheerleader, “just like Mom.” She went to cheer camp over the summer and was bubbling with excitement to cheer along with the cheerleaders at a real game. My heart was bursting with nostalgic pride as I watched her confidence blossom that night at the game. She waved to her cheer camp counselors, chatted with classmates, hugged her reading buddies, and greeted her teachers.
Kendall in her cheerleading uniform in 2006. (Courtesy of Kendall Harvey)
After we came home and put the children to bed, I became overwhelmed with emotion. I can recall exactly how it felt to be 17 years old on a Friday night. I remember the pride I felt when I put on my cheer uniform. I remember the friendships that were forged as we stretched and completed last-minute preparations for the game, and I remember the butterflies I felt stepping onto the track around the field, ready to cheer on our boys. I can remember how it felt to lift my friends into the air, show off my back handsprings, and try to kick higher than all of my friends doing toe touches.
In the cruelest twist of fate, I can only recall those days in my head. My body is incapable of doing any of the things I used to love doing. Instead of being joyful that my children experienced a fun evening and thankful that I had the same great experiences in my youth, I lay down to go to sleep filled with envy and anger.
I was so angry at Friedreich’s ataxia (FA) for taking away my ability to showcase my old cheers for my daughter when she asked me. I was jealous of the high school students who were doing what I loved to do. I was embarrassed that Kyle had to help me navigate the bleacher stairs painstakingly slowly. In other words, I let FA dominate my thoughts and turn them negative once again.
The next morning, when I went into Collins’ room to help her with her morning routine, I caught her looking at my walker like she often does. She turned to me and said, “I wish that you didn’t need this walker and that your legs worked perfectly so that you could do what you wanted to do.” She had so perfectly picked the words straight from my brain that I was convinced they must have been written on my forehead.
It was a humbling moment in my journey both as a mother and an FA patient. I just smiled and said, “I know, baby. Me, too. But I am so excited that I’ll get to watch you and Brooks grow up with perfectly working legs that will help you do whatever you want to do!”
And that is the truth. I am so thankful that their bright futures will not be shrouded by FA, and I will do my best to remember my sports-filled youth with gratitude instead of anger. As the band Oasis sings, “Don’t look back in anger.”