When the cat’s away, the mice will play. With Jessie’s dad out of town all week, life was different. Our schedule didn’t revolve around him and we took full advantage. Half of my time was spent working on a messy project. During the other…
Raising an Angel — Mary Kay

A Day in the Life of an Angel
First, she got her socks and shoes. Then her hat, Talker, and my pocketbook. When she handed her father the car keys, we knew she meant business. Maybe she’s stir crazy, or maybe she had something specific in mind to shop for, like ice cream? It could…

Whose Art Is It Anyway?
You know what is worse than a forgery? Art that comes home that was completed by an aide and not by my child. The first clue is that the work is too precise. The second clue is Jessie doesn’t care to…
After the service, we were heading for the door when we bumped into an acquaintance of my husband. After introductions, the men talked while the wife tried to rein in her young teen son. Jessie wanted to engage and twice reached for her device, but the…
Looking Forward, Looking Back
Why is it that when you see a photo of a baby, you can’t imagine what they will look like when they are grown, yet when you meet someone as an adult, it’s not difficult to identify their photo when they were little? I guess we…
If anyone ever asks me what is the best augmentative and alternative communication (AAC) device for their child, my response is, “the one they will use.” I know that doesn’t answer their question, but it is what we’ve learned to be true.
Angels Need to Keep Moving
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.
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…
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