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…
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…

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,…
Today, we planted sweet corn. The instructions on the seed packet advised planting in rows 12 inches apart and about 3 feet between the rows. We’ll stagger the planting and make more rows next week. Corn does best when planted at a minimum of three to…
There are many days to celebrate in May. These recognized days have interesting stories and give us something new to talk about. This isn’t even a complete list! May 1: Lei Day 4: May…
I’m afraid I’m going down the same path as Norther Winslow. After he found fame with his first writings, he found himself stuck on a poem for 12 years, with only three short lines to show for it. For the past week, I’ve…
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