Flying with Cammy, our superhero, on her 16th birthday
A family takes a special trip to be closer to their late daughter
I think most children in the U.S. look forward to getting their driver’s license on their 16th birthday. I know I did. But when our oldest daughter, Cammy, was diagnosed with Rett syndrome at 20 months old, our dreams for her to have typical experiences like that vanished. Knowing that our daughter wouldn’t have the same milestones as most people was a hard pill to swallow.
Cammy passed away on Dec. 13, 2023, at the age of 14, from complications of Rett syndrome. Her 15th heavenly birthday in March of last year was difficult for us because it was the first without her here on earth. Family, friends, and Facebook followers made sure we were wrapped in love and support.
If Rett syndrome hadn’t been in our lives, we would’ve been taking Cammy out to practice driving with her permit. We would’ve been planning her sweet 16 birthday party. We would’ve been making an appointment for her driver’s test at the Department of Motor Vehicles. We would’ve been waiting for her to consult with her sister, Ryan, about the perfect outfit, hair, and makeup for her driver’s license photo.
This year, for Cammy’s 16th birthday, I just wanted to get away. I wanted to fly. In my heart and mind, flying is the closest I can get to heaven, which makes me feel incredibly close to her.
Cammy’s favorite song
My husband, Billy, made my wish come true. Last week, Billy, Ryan, and I boarded a plane to Las Vegas. We set out to travel the world in a day because Cammy would’ve thought it was fun. First, we walked to the Eiffel Tower at Paris Las Vegas. Next, we went to New York-New York to see the Statue of Liberty. Then we went to see the gondolas at the Venetian Resort. And finally, we saw the Great Sphinx replica at the Luxor hotel.
On our way back, we stopped at the Fountains of Bellagio to show Ryan the water show. Our jaws dropped when the fountains danced to Andrea Bocelli’s “Time to Say Goodbye” — Cammy’s favorite song. We felt like she’d sent it to us. Tears streamed down my face as I recalled all the times we’d listened to it together.
On Sunday, we woke up early to catch a helicopter ride to the Grand Canyon. I was smiling the entire time as I soaked up all the untouched, beautiful land. I kept thinking that Cammy gets to see this view anytime she wants. As the helicopter touched down in the Grand Canyon, the three of us, all wearing our “Cammy Can” T-shirts, climbed out and marveled at the natural spectacle.
We spent about 30 minutes there, as I walked slowly along with Cammy’s ashes. I felt especially connected with her, as if she were guiding me to certain views. Like this place, I’ve always considered Cammy one of the greatest wonders of my world.
After our spectacular helicopter ride, Ryan wanted to fly over the Vegas Strip on a zip line. We all chose to fly on our stomachs instead of sitting in the harness. We looked like superheroes. It was yet another way to feel close to Cammy, the true superhero of our family. I imagined her laughing at us as we tried to be like her.
Being in the air made me feel like Cammy wasn’t alone on her birthday. I hope she felt that we were as close as we could be to her. The thought of Cammy in heaven on her 16th birthday, free from all the constraints that Rett syndrome had imprisoned her in, made me happy. I pictured her driving my mom and dad around in a purple jeep with the top down. I know my mom made her homemade pasta with cannolis for dessert and let her do anything she wanted.
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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