The IncRETTibles
— Jacqueline Babiarz

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 she was diagnosed, and at the time I was eight…

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…

When our oldest daughter, Cammy, was diagnosed with Rett syndrome in 2011, we knew that the only thing we could control was raising money for research, care, and a cure. So we hit the ground running, literally and figuratively, turning anything we could into a fundraising opportunity.