I have to take a minute to brag about the bravest girl I know. My daughter, Riley was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in the fall of 2023 after months of experiencing symptoms. We took her to the pediatrician after she told us she had been getting light headed for three months every time she stood up. My kid is a little bit like me, and ignores her body when it is trying to tell her something. When we finally got her in with the nurse practitioner at our pediatrician’s office, she had no idea what to do. They drew blood which was a traumatic experience for my kid and sent us to specialists. The pediatric cardiologist performed tests and diagnosed her with POTS which is classified as an autoimmune disorder.
Both my kid and I had been reading about POTS since she told me about her symptoms and it was validating for her to get the diagnosis. What sucked most was that she had been an athletic kid, playing field hockey, lacrosse, tennis and basketball and had become unable to play due to all of the running after standing up quickly. This didn’t seem to bother her one bit since she had been juggling sports with theater for a few years by that time. Instead of being angry about her condition, she found people online that she could connect with due to their common diagnosis of POTS. Most of these people were much older than her because it does not normally present itself until late adolescence. She found a woman who wrote funny songs about POTS and used humor to cope which was perfect for my little comedian. Riley was cast in a significant role in the high school’s production as a seventh grade student that year. She knocked it out of the park her first night, but had to leave during intermission on the second night due to POTS symptoms. My heart broke for her since she loved theater so much. I thought she might quit, but she didn’t. She leaned in harder.
Over the course of the school year she struggled to focus, had vertigo daily and nausea on a regular basis. Instead of whining about it, she sat in her room, played guitar and wrote a television script, all while maintaining good grades. She jumped back into music and joined a band through Detroit School of Rock and Pop. She got on stage for the first time in a real band a little over a year after her diagnosis.
Two months later, she tried out for the school play for the second time with girls from her middle school and upper school, and boys from a partnering all boy high school. She set her heart on a role due to the fact that the character was a villain and so over the top, but completely out of her comfort zone – Mrs. Wormwood (Matilda the Musical). And she got the role. As a mother, when my kid is happy, I am happy, and she is happiest when she is around her people which are theater kids. She has been participating in theater camps and community theater since she was 6 years old and she has made friends from different schools and of all ages. I had faith that she would crush the role, no matter what, but I had no idea just how much she was willing to put herself out there.
I did not see many of the rehearsals until a few days before the performance, but I had heard her walking around the house sounding a lot like Patsy Stone. I knew she had the attitude and the accent down, but I had no idea just how much she was able to get into character until the day before the first show when she came out of her room looking like Jenny Bui had done her nails. I knew she had a few wardrobe changes but I had only seen one of the costumes. The first time I saw her in her hot pink flapper dress was after they rolled her onstage in a wheelchair. Seeing my thirteen year old daughter rolled out with a giant baby bump made me both laugh and scream. She had transformed from the little girl playing dress up with my scarves into a 30 year old woman with a smart mouth, a head full of cotton candy instead of brains, and the vocabulary of a carnival worker. “OH BLOODY HELL!!” may be her new nickname.
For the next two hours I laughed and cried, and wondered how did this child come from me. She has her dad’s talent for sure, and apparently she has my attitude of “who cares what anyone thinks”. Nothing is going to stop this kid from doing what she loves. No challenge is going to get in her way. I am so proud that she lives in her heart so much and knows that her brain and body are the materials she uses to achieve her dreams. I can’t explain how much a gift it was to me to watch my child on the same stage I stood on over 40 years ago and own it in a way I never would have had the courage to do. Thank you Riley for letting me be your mom and come along for this ride. You are a shining star and I will forever be your biggest cheerleader.
For your listening pleasure: Loud from Matilda the Musical
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