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…
The IncRETTibles – a Column by Jacqueline Babiarz
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…
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…
Recent Posts
- ‘Spread the Word Day’ reminds me of our own encounter with the R-word
- New study supports switching between Daybue liquid and powder forms
- Leaky blood vessels in the brain linked to Rett syndrome: Study
- A song, an obit, and a special needs parent meltdown
- The importance of raising awareness of disabilities at school
- Boosting production of mutant protein causing Rett may be new treatment
- What we’ve learned in 29 years as Rett syndrome parents
- Acadia to challenge negative opinion on Daybue approval in EU
- I’ve been on the lookout for the look that says, ‘Enough is enough’
- When the smallest things prompt the most poignant reflection