Documenting and sharing my daughter’s life with Rett syndrome

I’ve always been a shutterbug, someone who loves to capture moments with a camera. When I had my firstborn, Cammy, and bought my first smartphone in the spring of 2009, documenting her was only natural. I began taking weekly and monthly photos of her to track her growth.

When Cammy was diagnosed with Rett syndrome in January 2011, documenting her became more of a necessity. I was then looking for more than growth; I was looking for a regression of skills or other Rett symptoms. Filming Cammy and my family’s life turned into an obsession, as I knew deep down that we’d likely outlive her.

In February 2011, I was coping with my 2-year-old’s Rett syndrome while taking care of my newborn daughter, Ryan. I desperately searched the internet for families who looked like mine and were making things work, but I couldn’t find any. The outlook for Rett families seemed grim. I decided there and then that mine would be the family I was desperately looking for. Other Rett and special needs families could look to us for hope.

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I began sharing our world on social media, mostly glimpses of amazing moments. Reading the encouraging comments helped me heal. Watching the number of followers grow to include people from all over the world was part of my therapy. Seeing strangers root for our underdog pushed me to make sure Cammy was living her fullest life.

Cammy’s life was our very own “Truman Show.” People couldn’t get enough of her journey, her beautiful face, and the life we were providing her. I was obsessed with posting daily, responding to messages, and helping and connecting newly diagnosed families, because they needed to see our family making this life work.

Keeping up with Cammy’s social media account was a full-time job.

Learning to live in the moment

For over a decade, I put Cammy’s life out there for the world to see. When Cammy passed away from complications of Rett syndrome last year on Dec. 13, I was no longer tethered to my phone.

Shortly after, on Christmas evening, Ryan asked to see my phone to look at the photos I’d taken that day with her cousins. When I handed it to her, she was stunned and questioned, “Mom, you didn’t take any photos?”

I was equally shocked. I hadn’t taken a single picture.

For the first time in 14 years, I wasn’t attached to my phone. I wasn’t taking photos and videos. I wasn’t afraid of missing a smile or a beautiful interaction. I was able to live in the moment with my family.

I don’t have any regrets about my addiction to documenting Cammy’s life. I hope it helped others as much as it helped me. Seeing daily memories on Facebook helps me remember the amazing life Cammy had. I cherish all the videos I have of her laughing, giving the middle finger, and enjoying life.

I used to get upset that I wasn’t in a ton of photos with Cammy because I was always taking the pictures. Now, I look at the photos and videos and think how lucky I am to see her smiling at me through the camera.

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.