Columns

Angels Need to Learn Proper Manners, Too

If my daughter, Jessie, doesn’t like what she hears, she will walk away. When her boyfriend — more of a buddy than a romantic interest — gets frustrated, he raises his voice and curses like a sailor. Jessie is unimpressed by his outbursts and avoids him…

Angels Change Over Time

I was on sabbatical this summer and didn’t write for BioNews Services or my blog. Sometimes you don’t realize how burned out you are until you stop. But the longer I went without writing, the more anxious I became. When people asked if we…

Rare Resilience: Is There a Gene for That?

Welcome to Terry Jo Bichell’s “A Rare Mind,” a new Angelman Syndrome News column. About 75 people, mostly women, were in the room at the Washington Marriott Georgetown, listening attentively to lectures presented by Global Genes about a really technical subject. The attendees were teachers, waitresses, housewives, and marketing executives…

Familiarity Is the Foundation for Acceptance

This past weekend was action-packed from front to back. There was Jessie’s last dance of the season, a wedding to which the whole family was invited (doesn’t always happen), and another wedding that Jessie was expected to attend (we were the transportation). Actually, we are friends of the…

Angelman on the Trail

Last week, on a clear, sunny day, we decided to go on a hike. My daughter Jessie complained every step of the way, and I loved every minute of it. Not really, but I’ve learned to accept her lack of enthusiasm over the years. It seems whenever I…

Angels Are Clever and Sneaky

Well, well, well, if Jess isn’t turning into a regular 007. Typically, when caught, she’s a deer in headlights, but not this time. While we were getting dressed for a Sweet 16 party, Jess was helping herself to treats tucked away…

Fundraising and the Butterfly Effect

Fear, anger, and disbelief were just some of the emotions experienced upon realizing my daughter was not making her milestones. These stages came in no particular order. I kept asking myself, “Why her, why me, why us?” Of course, I’m not the first person, nor will…

Having Fun While Building Skills

When it rains, it pours. When it snows, we play hooky. Today we are taking advantage of (hopefully) the last snowstorm of the season. We’d decided the night before to have a girls’ day. Jess had a delayed start. In her perfect world, we sleep in, watch…