The IncRETTibles
— Jacqueline Babiarz

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 couldn’t help thinking we’d also be in that situation in the not-so-distant future. Months later, the…

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 had the disease, I’d sometimes let my mind wander to the question, “If she could have…

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 outside religious education when it was time for them to receive their first Communion. Unfortunately, the…

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 a child of, we worried Cammy would never have the opportunity to enjoy many typical childhood…

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…

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, energy, and anxiety. When this seasonal depression is added to the grief I feel over…

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 right, the story of my oldest daughter, Cammy, who passed away just over a year…

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 long months going to appointments and therapies, trying to figure out why our 20-month-old daughter, who…

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, it’s seemed like the longest year of my life. Over the past week, I’ve cried myself…

When our oldest child, Cammy, was diagnosed with Rett syndrome in 2011, family, friends, and strangers rallied around us. Some of our closest friends have found special ways to bring Rett syndrome awareness and Cammy’s journey into their own lives. The Wintermute family, for example, has always kept Cammy…

October is a triggering month for me. Grief punches me in the gut every day. In October of last year, my oldest daughter, Cammy, went from having a fairy-tale homecoming at school to being hospitalized in the pediatric intensive care unit (PICU) for six weeks. She passed away…

Second in a series. Read part one. Cammy Babiarz took her first ride in a limo during her Make-A-Wish trip in November 2018. (Photo by Jackie Babiarz) Make-A-Wish is an extraordinary organization that grants wishes to children with critical illnesses. In my last column, I shared that…