The IncRETTibles
— Jacqueline Babiarz

Having a child with Rett syndrome who can’t communicate their needs, desires, and emotions as easily as a neurotypical person does is sad, frustrating, and complex. There were many times when we asked…

Caring for our late daughter, Cammy, often made my husband and me feel like we were sleepwalking through the night. Cammy had profound special needs due to Rett syndrome, requiring us to get…

In 2015, when a girl with Rett syndrome passed away, we for the first time experienced the death of someone we knew who’d had the disease. Our hearts ached for her family. I…

Rett syndrome robs a person of the ability to walk, talk, use their hands, and many other actions that most people, myself included, take for granted. While raising our late daughter, Cammy, who…

My husband and I both grew up Catholic and attended Catholic schools from the first grade through high school. Both our daughters were baptized. Because they attended public school, we had to look for…

When my late daughter, Cammy, was diagnosed with Rett syndrome at 20 months old in 2011, we grieved the loss of our perfect child. After learning about Rett and everything it can rob…

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…

Winters in Illinois, where I live, always feel so long. I’ve felt seasonal depression around this time for several years now. I suspect that the absence of sunshine and warmth affects my mood,…

As an adapted physical education teacher, I travel to multiple schools. This year, I’m visiting five schools, with students ranging from preschoolers to eighth graders. I’ve been slowly sharing with colleagues, when it feels…

Winter break always brings me back to December 2010, when all I could think was, “This will be our last Christmas and New Year’s without an official diagnosis for Cammy.” We’d spent several…

On Dec. 13, it’ll be one year since our oldest daughter, Cammy, passed away from complications of Rett syndrome. In some ways, I can’t believe it’s been a full year; in other ways,…