The IncRETTibles
— Jacqueline Babiarz

Summer is always hard on me. I don’t get much respite with a daughter who has Rett syndrome. Summer school is only three hours a day for five weeks, so my body and mind don’t get…

When my oldest, Cammy, turned 1 in 2010, I began taking her to various appointments to find a reason why her skills were regressing. We went to a neurologist, hearing and vision specialists, physical therapists, occupational therapists, and…

A steady flow of firefighters, emergency medical technicians (EMTs), and police officers came through our home a couple of weeks ago — but not for the same reason as they have in the past. We had to continually reassure…

I tend to become quite envious when I see parents selling their no longer needed baby items. It means they’re done with changing diapers, pushing strollers, and cleaning up drool. Their children are at a more independent stage of…

All my life I’ve heard inspirational phrases such as “Carpe diem” (“seize the day”), “You can’t take it with you,” and “Life is short.” They were just words to me until I had a child with profound special needs.

For the past two months, I’ve been overwhelmed with thoughts of an upcoming milestone: My oldest, Cammy, will be graduating eighth grade at the end of this month. I imagine this transition is difficult for a lot…

Each year, we give out a Ripple of Hope Award at our annual fundraiser in honor of our daughter Cammy, who has Rett syndrome. It’s given to a person or group that gives us hope for…

This Saturday, April 29, our family will host our 11th annual Cammy Can’s Cinderella Story fundraiser for the International Rett Syndrome Foundation in honor of our daughter Cammy, who was diagnosed with Rett syndrome in 2011…

On my daughter’s birthday on March 10, news of the first-ever treatment for Rett syndrome broke. While it was Cammy’s big day, this was an incredible gift of hope to all of us. The approval by…

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…