Mary is a blogger with a mission. She wants to make the world bigger for her nonverbal daughter, Jessie. She writes about their Angelman syndrome journey and how their life changed when they found her AAC voice.Just one look and I knew my well-laid plans for the day were for naught. Jessie woke up congested and tapping her nose. Sure signs of an impending cold. Within moments, plan B was enacted. I called her program to let them know she’d be out…
We are keenly aware of the challenges of Angelman syndrome: seizures, sleeplessness, and being nonverbal to name a few. However, the disorder has positive aspects, too. My favorite of my daughter’s traits are her sunny disposition and ready smile. I love that she…
Rainy days and Mondays always slow us down, and when it rains on a Monday, we want to stay home. That’s what we did this week. Jess had gotten up once during the night and was moving slowly. Upon seeing the rain and the wind…
When it was time to greet each other, Jess reached her hand out to everyone within arm’s reach. She didn’t look people in the eye, but coyly smiled while looking to the side. A few minutes later, the pastor shared why some congregants raise…
There has been a nightly pattern. Jessie puts herself to bed first, then I turn in, and then my husband follows an hour or so later. He falls into slumber as soon as his head hits the pillow, Jess has been asleep for hours,…
Mom and I did not enjoy shopping for clothes together. Not only did we have different styles but we also couldn’t agree about how they should fit. When I was a teen, after we settled on a pair of jeans, I’d take them to my next-door…
Every September, I anxiously waited for the Sears Wish Book to arrive in the mail. This gave me three months to pore over the pages to determine what I wanted for Christmas. Not only did this help my mom with ideas but it…
October is AAC Awareness Month. If you have an Angel, it’s vital that they have a voice. It’s been my mission to have people recognize Jessie’s iPad as her voice. In previous years, to support her, I’ve gone voiceless. This helped me…
After a hot, humid summer with intermittent rain, we are ready to welcome fall, not just for the change of weather but because it is the beginning of the dance season! Dancing and pizza make for a perfect night out. (Courtesy of Mary Kay)…
Things that make me go hmmm … As I waited at the pump for a fill-up, the attendant yelled, “Hey lady, don’t smoke there!” About 20 feet away from my car, a 40-something-year-old woman was smoking next to the gas storage tank. The area…
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