We Have a Teenager in the House

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by Jackie Babiarz |

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When my oldest child, Cammy, was born on March 10, 2009, I imagined her at certain ages.

I pictured her at 4 riding a two-wheeler for the first time. The 10-year-old version would have a sleepover with her friends on her golden birthday. The 13-year-old would start to talk back and roll her eyes at her parents. The 16-year-old would get her driver’s license. The 18-year-old would graduate high school and head to her parents’ alma mater, the University of Illinois, in the fall. Cammy at 21 would celebrate in Las Vegas with her parents, family, and friends. At 23, she’d land her dream job. At 30, she’d be married and expecting her first child.

All of these dreams immediately vanished once I received the “Your daughter has Rett syndrome” news right before her second birthday. I had to create new images. I had to accept that my daughter wouldn’t be on the path most kids follow.

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Several of Cammy’s birthdays after her diagnosis just hurt. I watched her cousins and peers grow up on the typical growth curve while she was not even on the chart.

It wasn’t until Cammy was 12 that I wholeheartedly enjoyed her birthday. I let go of any prenotions and expectations. I reflected on how far she had come in 12 years. And she had the best birthday, smiling ear to ear the entire day.

birthday | Rett Syndrome News | a girl at bottom center, with balloons to her left and right, "birthday" spelled out in letters behind her, and two giant balloons reading 12 above her

Cammy in a sea of balloons on her 12th birthday. (Photo by Jacqueline Babiarz)

Today, Cammy is an official teenager. We’ll celebrate how much she has accomplished in those 13 birthdays. We’ll celebrate her very own milestones. We’ll celebrate over a dozen years of Cammy fighting back, winning battles against Rett syndrome, and proving to be a superhero in countless ways.

Even though we were told that our daughter would never speak, her eyes speak volumes on their own or using her Tobii eye-gaze device. Since we were told that 80% of girls with Rett will have seizures, we’re thankful every day she is part of that 20% who don’t, and hold on to hope that she will continue to be seizure-free.

We were given a list of things that Cammy will never do because of Rett syndrome. However, we were never given the list of once-in-a-lifetime experiences she would do. While I pictured Cammy with her dream job as a young adult, I never could have imagined that she’d already be her own boss.

In her 13 years of life, my daughter has accomplished more, inspired infinite people, and made us prouder than I could have ever dreamed. Happy birthday, Cammy. The world is yours for the taking. I’m eternally proud of you and love you endlessly.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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