The IncRETTibles
— Jacqueline Babiarz

Handprint art. Construction paper flowers. Homemade cards. Acrostic poems spelling out M-O-M. These are the images that come to mind when I think of Mother’s Day. For many years, my oldest daughter, Cammy, proudly gave me these treasures. Because she had Rett syndrome, Cammy was never able to…

There is one month of school left. For many families, that means countdowns, celebrations, and the final stretch of a busy school year. For me, it is a quiet reminder of all the moments my late daughter, Cammy, should be experiencing right now. Some of these milestones are exciting,…

“How do you tell your child their sibling is going to die?” That is a question I never expected to Google. In early November 2023, our oldest daughter, Cammy, was on a BiPAP machine in the pediatric intensive care unit (PICU) when she stopped breathing. The medical team rushed…

My late daughter, Cammy, was diagnosed with Rett syndrome at just 20 months old in 2011. From that moment on, advocacy became part of our everyday life. Cammy’s journey taught our family not only about the challenges that people with disabilities face, but also about the importance of compassion,…

“Do we have chunky peanut butter?” It was an ordinary question my husband asked one afternoon last year. He was standing in the kitchen, scanning the pantry, and thinking about sandwiches. But his question stopped me cold. For 15 years, only smooth peanut butter filled our shelves. Not because we…

I never thought about where I sat in the school’s gymnasium until my late daughter, Cammy, gained a wheelchair when she was 3. For most of my life, taking a seat was automatic — I’d climb to the top row of the bleachers, without hesitation, and settle in wherever the…

On Jan. 3, 2012 — my husband’s birthday — our late daughter, Cammy, received her voice. It wasn’t a voice in the traditional sense, as it didn’t come from her mouth or vocal cords. Rather, it came from a computer — a technology so advanced it felt almost unreal.

Dec. 13 marks two years since my oldest daughter, Cammy, passed away from complications of Rett syndrome. She was 14 years, 9 months, and 3 days old. I hold on to that number because it matters. It’s not just a measure of time; it’s a line in our family’s…

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’ve always been fascinated by birth order theory, which suggests that the order in which children are born may influence their personality traits and relationship roles. As the youngest of six kids, I loved being the baby of the family. While my siblings would say I was spoiled,…

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…