I’m the youngest of six children: four girls, a boy, then another girl. (That last would be me.) I was always jealous that my sisters were able to be together while attending the same high school and college. Hearing their memories of carpooling, hanging out, being teammates, and preparing…
Getting my hair washed at a salon is one of my guilty pleasures. It feels like I’m being pampered, and the deep scalp massage feels like a luxury. But last week, as my head was in the sink, I felt tears welling up. I closed my eyes to try to…
Having a child with Rett syndrome who can’t communicate their needs, desires, and emotions as easily as a neurotypical person does is sad, frustrating, and complex. There were many times when we asked our late daughter, Cammy, a series of yes-or-no questions to figure out what was going on…
Caring for our late daughter, Cammy, often made my husband and me feel like we were sleepwalking through the night. Cammy had profound special needs due to Rett syndrome, requiring us to get up in the middle of the night. Our baseline became so skewed over the years; it’s…
When I was growing up, my parents never made a big deal out of graduations. In fact, my brother was at the beginning of the alphabet, so he walked across the stage in high school, received his diploma, and promptly exited through a side door, where we all met him.
In 2015, when a girl with Rett syndrome passed away, we for the first time experienced the death of someone we knew who’d had the disease. Our hearts ached for her family. I couldn’t help thinking we’d also be in that situation in the not-so-distant future. Months later, the…
Rett syndrome robs a person of the ability to walk, talk, use their hands, and many other actions that most people, myself included, take for granted. While raising our late daughter, Cammy, who had the disease, I’d sometimes let my mind wander to the question, “If she could have…
My husband and I both grew up Catholic and attended Catholic schools from the first grade through high school. Both our daughters were baptized. Because they attended public school, we had to look for outside religious education when it was time for them to receive their first Communion. Unfortunately, the…
When my late daughter, Cammy, was diagnosed with Rett syndrome at 20 months old in 2011, we grieved the loss of our perfect child. After learning about Rett and everything it can rob a child of, we worried Cammy would never have the opportunity to enjoy many typical childhood…
I think most children in the U.S. look forward to getting their driver’s license on their 16th birthday. I know I did. But when our oldest daughter, Cammy, was diagnosed with Rett syndrome at 20 months old, our dreams for her to have typical experiences like that vanished. Knowing…
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