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…
Columns
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)…
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…
Mischievous Angels
To celebrate changes ahead, I wanted to make a special dessert for my husband. Inspiration came when I saw watermelon on sale. After a summer of overindulgence, a watermelon cake is not only figure-friendly, but it looks impressive, too! I chose a small, seedless…
Finding an Angel Buddy
We spent our last blast of summer at the beach. Jessie swam in the ocean, sifted sand on the seashore, searched for wild ponies, rode a go-kart, and went to an outdoor concert. To top it off, our hosts provided delectable meals. While we ate like…
Bucket Lists Become Adventures
Before the phrase “bucket list” was coined, I had one! I was 9 when I read the book “Misty of Chincoteague.” For many young girls, this novel made us realize two things: We wanted a pony of our own, and we wanted to visit…
She saw him from across the room. I’m sure everyone in the restaurant did. However, the difference was Jess wanted to meet the young man while the other patrons tried not to notice him. As far as Jessie was concerned, a person being on the spectrum…
For a moment, I lost her. We had just been swimming and were walking back to the car. I doubled back to put the inner tubes away and the next thing I knew, she disappeared. The gate was locked and Jess was a gone girl. My…
Recent Posts
- Angelman syndrome has shaped how we celebrate our son’s birthday
- MVX-220 Angelman gene therapy trial enters first human testing
- Recognizing the importance of exercise for Angelman caregivers
- When the world forgets our children
- Dosing begins in broader trial of Angelman syndrome therapy
- The guessing game involved in caring for a nonverbal child
- MVX-220 for Angelman syndrome earns FDA fast track status
- Starting seizure medicine has us grappling with anxiety and doubt
- Genetic medicine could target Angelman’s root cause
- ‘Urgent need’ for treatment drives GTX-102 study enrollment