The IncRETTibles
— Jacqueline Babiarz

In our special needs world, we sometimes get gut-punched. I felt this first when our daughter Cammy was diagnosed with Rett syndrome in 2011. I still feel it when we add equipment or a clinician to her team.

My daughter Cammy has profound special needs due to Rett syndrome, which leaves me terrified when someone else has to take over her care and needs. But I’ve learned to handle it. I do as much as…

As a parent of a child with special needs as well as one who’s neurotypical, I have a lot to juggle and balance. Our firstborn, Cammy, has Rett syndrome. She was 20 months old when…

As a rare disease family, we live in extreme peaks and valleys. The swings are swift, intense, and dramatic. Last month, my husband and I spent a weekend celebrating my 43rd birthday with loved ones in Las Vegas. My…

There are a few things I enjoyed about how people responded to the COVID-19 pandemic. I loved the birthday car parades, socially distanced trick-or-treating at Halloween, my husband working from home, and how life in general…

Thanksgiving 2010 was the first emotional roller coaster holiday I experienced. Two days earlier, I had taken my 18-month-old daughter, Cammy, to a physiatrist to see if she could provide any insight as to why Cammy was…

Last in a series. Read part one here. On June 10, 2016, Cammy, my daughter with Rett syndrome, and I had a date to see the blind singer Andrea Bocelli and his violinist, Caroline Campbell, in…

First in a series. My dad absolutely loved listening to Andrea Bocelli, Frank Sinatra, and any musician of Italian descent. I wondered if he listened to Bocelli when he babysat with my firstborn, Cammy, when she was…

Since stepping back into teaching recently after staying home for 14 years to raise my two daughters, I tend to think about them often while I’m working. I work with students at various grade levels, from preschool to…

Each year, about 40,000 people train for the Chicago Marathon, one of the city’s most popular events. Following a rigorous training schedule for months to run 26.2 miles through Chicago’s amazing neighborhoods is a unique experience. It…

Dressing a child with special needs can be a huge challenge. The child might have sensory sensitivities, low muscle tone, or a feeding tube, which can create challenges for parents since there are limited clothes made for such…

I was recently reflecting on the moments when my oldest daughter, Cammy, who has Rett syndrome, transitioned to each of her new schools — first from early intervention to an early childhood center when she…