What my family and I learned from my late daughter
Beyond and through her Rett syndrome, she taught us much about life
In her short 14 years on earth with us, my daughter Cammy taught my family and many others more about life than we could’ve ever taught her. She was more than a little girl who had Rett syndrome. She brought out the best version of everyone she was around.
She was surrounded by incessant love, encouragement, positivity, and happiness. If everyone were as kind, compassionate, empathetic, inclusive, and loving every day as they were when spending time with Cammy, the world would be an incredible place.
Cammy taught us patience. In fact, she was as patient as they come. She was never irritated while waiting or attending seemingly endless therapies and appointments. Cammy had to be patient because she relied on others every minute of her day.
She also taught us that we can do hard things because almost everything Cammy had to do was difficult. She inspired several of us to run the Chicago Marathon in 2012. Crossing the finish line with her was one of the proudest moments of my life. In 2014, Cammy inspired her dad to spend five days running 150 miles across Illinois and to get an army of friends to join him.
Cammy taught us that it’s OK to ask for help and rely on others. She showed us that people typically want to help. People want to be part of something bigger than themselves, so we need to let them.
She taught us that you can communicate so much without uttering a single word. Cammy’s eyes were the windows to her soul; in fact, her communication with her eyes was unmatched by any other nonverbal person we’d met. We knew just how wicked smart, witty, empathetic, and funny she was, all through her eyes.
Love is love is love
“Sesame Street” and “Mister Rogers’ Neighborhood” may have taught Cammy the importance of community workers, but she taught us firsthand that they’re imperative. First responders, teachers, nurses, and so many more helped Cammy and our family in more ways than we could ever recall. She loved them all, and their love and support went beyond their job descriptions as they provided hugs and wellness checks for our entire family, not just Cammy.
Cammy taught us unconditional love. We went to the ends of the earth for her, pushed our bodies to our limits, and took advantage of every opportunity thrown our way. We left no stones unturned for treatments, therapies, education, care, and Rett research fundraising.
Our late daughter was a kind, smart, funny, sassy, determined, loving, laid-back, wise person who just happened to have Rett syndrome. I hope when people remember her, they’ll remember that she was so much more than her disease.
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.
About the Author
Comments