Author Archives: Mary Kay

Little did we know what surprises were in store for the day ahead. As the sun was rising, my husband saw that we had an unexpected guest. Underneath the bird feeder was a young tom turkey. He is a quiet visitor and runs off at…

Dear Angelman syndrome, We read your definition, and we didn’t like it. Stating that a person with Angelman “can’t do this” and “can’t do that” wasn’t going to work for us. We opted for “I think we can” instead. Our angel, Jess,…

Because people rarely see an augmentative and alternative communication (AAC) device in action, they don’t recognize it. Most assume Jessie carries an iPad for entertainment. Though talking is amusing, to her it is no game. October is AAC Awareness Month.(Courtesy of Mary Kay) When…

When my daughter, Jessie, was 2, she saw a balloon while we were waiting in line at the market. I pulled it closer for her to see, then let it go. She smiled as it floated to the end of its string. After observing this, the shopper next to me…

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical storm caused a power outage, and then our well stopped working. As soon as we were…

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the incentive she needed to begin her day. Every time I redirected her to bed, she pushed the covers…

Three things keep me up at night: worrying that my daughter’s seizures will return, thunderstorms, and a waning gibbous moon. This past month, we hit the trifecta and experienced all of the above. I saw a seizure a few weeks ago. It…

Since 2020 has gone to hell in a handbasket, it’s necessary to step away from the 24/7 news cycle. I don’t want to focus on the virus. Instead, I declare this the “Year of the Dog.” As they say, “You want a friend in Washington? Get a dog.”…

Captain’s Log, Stardate 04.14.2020: This is our 34th day of self-quarantine. To survive, we’ve had to adapt to new restrictions and find distractions to prevent ourselves from losing our marbles. *** Easter was quiet. Instead of having family and friends join us to celebrate,…

I learned to cook by my mother’s knee. We baked cookies and kneaded dough. She even would give me cake batter for my turquoise Easy-Bake Oven. Sometimes, Mom would pull up a chair to the kitchen sink for me to stand on.