The IncRETTibles
— Jacqueline Babiarz

First in a series. My late daughter, Cammy, was diagnosed with Rett syndrome in 2011, when she was just shy of 2 years old. A year later, someone brought up the idea of referring her to Make-A-Wish, an organization that grants wishes to children with critical illnesses.

My late daughter, Cammy, loved “Sesame Street” because it was the world she imagined for all of us. Kindness, patience, unconditional love, empathy, hope, and acceptance are just a few of the core values our family learned from the show, but we actually lived them with Cammy. Our daughter’s…

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…

During all of my school-age years, once August came around, I was ready to go back. I loved summer, but I also loved going back to school to see friends, play on sports teams, and follow a routine. I even looked forward to a few classes. As a parent, I’ve…

After seven months, we finally have a memorial set for my daughter. Cammy passed away last December, at the age of 14, due to complications of Rett syndrome. It took that long to figure out an appropriate venue with the capacity we think we’ll need for folks…

As a parent, some time-sensitive decisions and actions need to be made when your child passes away. Before the death of my daughter, who had Rett syndrome, I knew that certain details needed to happen immediately. Nevertheless, I cannot imagine anyone is ready to deal with them when…

Self-preservation. Boundaries. Circles. Comfort zones. These are practices I’ve learned during grief therapy. I’ve been implementing these coping tools since my oldest daughter, Cammy, passed away from complications of Rett syndrome last December. She was 14. After Cammy died, many friends and family encouraged self-preservation. They…

Not having to make every decision around accessibility and special needs is definitely taking time to get used to. It has been six months since my oldest daughter, Cammy, passed away due to complications of Rett syndrome, and my mind still goes directly to figuring out how to…

I’ve been in grief therapy ever since my oldest daughter, Cammy, passed away last December due to complications of Rett syndrome. When I filled out the intake forms, a question really struck me: It asked if my loved one died unexpectedly. I sat there staring at it…

I’ve had several titles in my life: sister, daughter, mother, wife, teacher, and coach, to name a few. But the latest one isn’t something I think I’ll ever get used to: bereaved parent. I learned that there is a Bereaved Mother’s Day every year on the first Sunday in…

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…

Shortly after our daughter Cammy passed away on Dec. 13 due to complications of Rett syndrome, we were approached by Joe Kish, the assistant principal at Franklin Middle School, our youngest daughter Ryan’s school in Wheaton, Illinois. He asked about designating Cammy Can, the organization we created to…