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…
Columns
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.
My daughter is living the good life. This week, Jess baked bread, went to the movies (the scheduled shore trip was postponed due to weather), attended a dance and then went out to lunch with a friend. We…
Following the River
This morning, I woke to rain followed by gentle rolling thunder. The sound reminded me of our trip to Haiku a few years ago. As I was drifting back to sleep with Maui on my mind, the husband came barging into the bedroom and…
In my book, diet is a four-letter word. Just like the Harry Potter character, “He Who Must Not Be Named,” this word should not be spoken. My reason is that it implies control and sacrifice, neither of which I have, or want to do. Also,…
Recent Posts
- Parenting a child with Angelman syndrome requires constant vigilance
- Phase 3 trial begins testing potential Angelman syndrome treatment
- Our nonverbal son’s hospitalization taught us some important lessons
- Angelman clinical trial enrolls children to test new treatment
- Angelman syndrome seizures are unpredictable, but we carry on
- $32.5M to advance rugonersen into late-stage testing for Angelman
- GTX-102 data show continued developmental gains in Angelman
- What standardized assessments miss about my son with Angelman
- Surgery usually corrects misaligned eyes in kids with Angelman, study finds
- The joys and challenges of disability equipment for children with Angelman