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…
Columns
This morning was like any other day, except it wasn’t. Instead of my doing “everything,” Jess pitched in to help without being asked! As a mom, it’s almost always easier to do chores myself, but I need to stop that. It’s…
When Angels Meet
Several years ago, when I was given the choice of going to an American Speech-Language-Hearing Association Convention or the Closing The Gap (CTG) Conference to help in the Speak for Yourself booth, hands down, I chose CTG. The reason…
She’s a Card-carrying Angel
During the summer, Jess goes out twice a week with Shonda. I like that they go exploring and shopping together. Yes, it’s nice to have alone time, but it’s even better for Jess not to be with her mom all the time. If she were a…
The one thing I know for certain is that life does not go as planned. When Jess was a wee one, I assumed she’d be a barn rat (someone who lives and breathes horses) and have friends to tell her secrets to. Though…
Every Fourth of July, Nathan’s has a hot dog eating contest. This year’s winner scarfed down 74 dogs within 10 minutes — a feat that leaves me feeling both awed and disgusted. First of all, why? Why would someone want…
How Angels Beat the Summer Heat
On the first day of July, there’s barely a breeze. It’s 88 degrees Fahrenheit, and it’s not yet 10 a.m. By mid-afternoon, the temp is set to climb to a wicked-hot 97 degrees. I hear the song “Heat Wave” in my head, and I…
Regarding seizures, we just experienced the perfect storm. Jess had her period and was ill. A few months ago, I took her off the pill. She’d been on it since she was a teen, and it enabled her to be weaned off all medications.
An Angel Mom Delivers
Kids get sick, it’s to be expected. However, we have had some memorable moments. Like the time we were walking around a Home Depot Expo after eating an Italian dinner (being specific so you can visualize). We were in the bathroom section when I noticed Jess…
If I had to choose a traveling partner or a moving buddy, it’s a toss-up between my husband and my daughter. He’s the driver and the one with the credit card, but she is the one who paves the way.
Recent Posts
- Traveling with a child with Angelman syndrome is easier in the early years
- 6 months of keto diet shows promising trends for Angelman children
- 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