The IncRETTibles – a Column by Jacqueline Babiarz

My Daughter Inspired Me to Go Back to School

A couple days after my daughter Cammy turned 3, she went straight from early intervention to school. I had prepared her for the transition, but I was not fully prepared. I told Cammy over and over, “It’ll be great. You’re ready.” But I knew…

What We’ve Learned Since Our Daughter’s Diagnosis

At 2:45 p.m. on Jan. 7, 2011, we received a phone call confirming that our daughter Cammy has Rett syndrome. Since then, our lives haven’t been the same. We’ve grown so much in the past 11 years. We’ve learned to grieve the loss of a “perfect” child. The…

How Dividing and Conquering Benefits Our Family’s Health

When you have a child with special needs, part of the grieving process is acceptance. I don’t mean accepting your child’s diagnosis of Rett syndrome. I’m talking about accepting your new normal, and accepting the decisions you have to make about what is best for your family. This…

The Day My Nonambulatory Daughter Flew

Have you ever searched for a gift for nonverbal, nonambulatory child who can’t use their hands? Not much shows up. People with Rett syndrome are difficult to shop for. When my daughter Cammy was younger, stuffed animals filled her gift bags. Then, it was socks, infinity scarves, and…

A Winter Concert Triggered Painful Emotions

In 2019, my two daughters, who are two years apart, attended different schools. My neurotypical daughter Ryan’s school had a winter concert, where all grades sang songs prepared during music classes. My older daughter, Cammy, who has Rett syndrome, did not have a winter show at her…

When I Close My Eyes and Make a Wish

On my fifth birthday, I closed my eyes and wished for a two-wheeler with a banana seat and streamers coming out of the handlebars. I blew out the candles. A couple weeks later, on Christmas, the bicycle appeared. On my 11th birthday, I closed my eyes and wished that my…

My Daughter Has Adapted to My Husband Working From Home

The COVID-19 pandemic has changed many family dynamics. Those who used to travel or work in an office have been working from home for the past 20 months, which means couples have spent more time together lately than ever before. My family is no exception, as my husband,…