How we’re pulling out the stops to make our daughter’s life full

With a new addition to our home, we're practicing ways to 'seize the day'

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by Jackie Babiarz |

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All my life I’ve heard inspirational phrases such as “Carpe diem” (“seize the day”), “You can’t take it with you,” and “Life is short.” They were just words to me until I had a child with profound special needs.

In 2011, our firstborn child, Cammy, was diagnosed with Rett syndrome when she was 20 months old. After learning about her life expectancy, I vowed to give Cammy the best life possible for however long we were blessed to have her.

Keeping those mantras in mind, I can say with certainty and without any regrets that we’ve given Cammy everything in our power to live a full life, despite her Rett syndrome. We’ve made sure that any opportunity presented to us would happen, so that Cammy could experience everything possible. She’s attended professional sports games and concerts, appeared in commercials, and met famous people, including singer Andrea Bocelli and now retired Chicago Blackhawks great Duncan Keith. Cammy has had some once-in-a-lifetime experiences in her 14 years.

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Most recently, we added an in-ground pool, an easy decision after watching Cammy fight for her life this past year, with difficult appointments and numerous long hospital stays. We’ve come to grips with the fact that Cammy won’t be going to college. Those savings are now best spent on something she loves more than anything: being in the water. Cammy would turn into a mermaid if it were possible.

Since our pool has been open for a month now, Cammy’s entire disposition has become happier. Even her teachers have noticed a difference. The pool opened up more communication for Cammy: She frequently uses her Eyegaze device to talk about the pool or how she’d prefer to be swimming than in school.

While it’s been a battle to find activities to do in the summer, given Cammy’s temperature regulation issues, the pool has given our family more special time together. We’re able to take her to the water anytime she wants for as long as she wants. Cammy gets to listen to the music she enjoys while soaking up the sun in a comfortable and safe therapeutic float. It’s also opened up more social opportunities for friends and family to interact with her.

Watching her smile and her body relax in her very own pool is what we hoped for. Everyone’s mental and emotional health has soared since our first swim in our backyard. Installing an in-ground pool is the best “seize the day” decision we’ve made.

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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