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…
Columns
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…
Jessie took the Goober Grape out of the cabinet and handed it to me. I said, “Oh, you are hungry, I need to find some bread,” and proceeded to look for a loaf. Then I had to tell her we were out and that we would…
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…
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…
Board games are meant to be fun, but they have not been a source of lighthearted entertainment for our family in the past. My daughter’s poor fine motor skills have hindered her manipulation of the pieces and caused her short attention span to kick in. She…
After writing this column for a year, quoting Forrest Gump sums up my state of mind: “And that’s all I have to say about that.” I’ve come to a point where I don’t have much to share. Words do flow better…
Fun Times with My Angel
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…
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