The IncRETTibles
— Jacqueline Babiarz

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.

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 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…

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…

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…

When your child is nonverbal and unable to use her body purposefully, it’s intriguing to open an email from her teacher that reads, “Your child has a chance to be in the school’s fall play.” Cammy is…

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…

When our daughter Cammy was almost 2 years old, she was diagnosed with a rare disorder called Rett syndrome. Among the things Rett can steal from our children is their voice. In our community, we often play…

Today is my mom’s 78th birthday, and we are going to celebrate it the same way as if she were still with us. I sent my siblings Dunkin’ gift cards to treat them to coffee,…

There are only a handful of people I describe as “someone you want on your team.” My 17-year-old niece, Linden, is one of those people. Among all the perks of marrying my husband, becoming Linden’s aunt is…

Halloween should be fun and not stressful. However, for many years it was neither fun for us nor stress-free. My daughter, Cammy, has Rett syndrome, and we were faced with how to…

A big reason I write this column is because we are now the family I desperately wanted to see when I researched Rett syndrome 11 years ago. I wanted to see a family making it work,…