The IncRETTibles – a Column by Jacqueline Babiarz

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 in-laws watched our daughters so we could get away. My birthday…

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 seemed to slow down. From the perspective of a special needs…

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 regressing. The physiatrist didn’t know, but she called in another doctor…

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 concert for the second time. This time we were Campbell’s guests.

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 a baby, because she absolutely loves the singer’s music and his…

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 eighth grade, in adapted physical education. I’ll picture my 13-year-old…

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 always intrigued me, but I didn’t think it was an experience…

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 needs. These parents can’t just walk into a store and purchase…

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 turned 3, then to a new building for kindergarten through fifth…

Teachers often spend their own money to purchase items their students need to flourish. According to a survey conducted by the nonprofit organization AdoptAClassroom.org, teachers spend an average of $750 of their own money each year for classroom supplies. As a physical education teacher, I can personally attest to…