The IncRETTibles – a Column by Jacqueline Babiarz

A Rett syndrome clinical trial was our way of paying it forward

While raising a child with profound special needs, I felt like we didn’t have control over much. Rett syndrome grabbed ahold of our late daughter Cammy, and there wasn’t much we could do about it. The only things we felt we could control were raising awareness, fundraising, and assisting…

I lost 40 pounds — twice

My oldest daughter Cammy weighed 40 pounds at her heaviest. Having a 40-pound 5-year-old would be fine, but Cammy was 14 when she weighed that. Her 4-foot-tall, 40-pound frame was at “failure to thrive” for most of her life. Cammy’s weight was always a catch-22 for us. It’s scary and…

A pink homecoming dress keeps sisters connected

Grief is complicated. There’s no playbook, but I wish there were. I try to prepare myself for events that I know will evoke grief, but I can’t stop it from bubbling up. My oldest daughter, Cammy, passed away in December 2023 at the age of 14 from complications of…

Crisis prevention training reminded me of my late daughter

Last week, I attended a Crisis Prevention Institute (CPI) training session at the school where I work, and I couldn’t stop thinking about my late daughter, Cammy. Listening to examples of students’ trauma and precipitating factors that staff and fellow classmates might not be aware of reminded me of my…

Preparing our youngest for high school is not what we’d hoped

I’m the youngest of six children: four girls, a boy, then another girl. (That last would be me.) I was always jealous that my sisters were able to be together while attending the same high school and college. Hearing their memories of carpooling, hanging out, being teammates, and preparing…