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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,…

A Rare Disorder’s Ripple Effect on Family

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 one of them. I met Linden on her first…

How to Make Halloween More Inclusive

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 deal with a child with special needs at Halloween. Cammy,…