The plan was for Dad to take her to the gym — something they could do together. I planned on recovering from a busy day while they were out. The next thing I knew, I was told to get my rear in gear and join them.
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Winter Colds and Snowstorms
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…
An Angel’s Gift of Empathy
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…
Sleepless in New Jersey
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,…
Beauty Inside, Beauty Outside
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
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…
Angels Can Dance the Night Away
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)…
Recent Posts
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- What standardized assessments miss about my son with Angelman
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- Goals that matter most for our child living with Angelman syndrome
- Home videos may help doctors evaluate Angelman patient skills
- After hesitation, we finally took steps to address our son’s disrupted sleep
- International Angelman Day: Why Feb. 15 matters for families