Columns

When my daughter, Jessie, was 2, she saw a balloon while we were waiting in line at the market. I pulled it closer for her to see, then let it go. She smiled as it floated to the end of its string. After observing this, the shopper next to me…

Hope is a treatment that works for any disease. Why don’t doctors understand that? When my son, Lou, was diagnosed with Angelman syndrome 20 years ago (wow, that was quick), I was told there was no hope for a cure. I was informed that Lou would have uncontrollable seizures,…

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical storm caused a power outage, and then our well stopped working. As soon as we were…

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the incentive she needed to begin her day. Every time I redirected her to bed, she pushed the covers…

We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with rare diseases. We need one more number. A unique identifying number that can cut through all the mustard, all the red…

My son Lou’s leg has been broken for 18 months. It must hurt like crazy. If I had a broken leg even for a day, I would surely be crabby, despondent, and mean. But not Lou. Because he has Angelman syndrome, my 21-year-old son cannot speak, but he is often…

Three things keep me up at night: worrying that my daughter’s seizures will return, thunderstorms, and a waning gibbous moon. This past month, we hit the trifecta and experienced all of the above. I saw a seizure a few weeks ago. It…

Since 2020 has gone to hell in a handbasket, it’s necessary to step away from the 24/7 news cycle. I don’t want to focus on the virus. Instead, I declare this the “Year of the Dog.” As they say, “You want a friend in Washington? Get a dog.”…

This is not a story about COVID-19. It is about Angelman syndrome and a daily jazz show, but the coronavirus does make an appearance. If it weren’t for Angelman syndrome, I wouldn’t know anything about jazz. If we didn’t live near Music City, I wouldn’t know professional musicians. If musicians…

We have a problem: My husband, Dave, is a surgeon. Normally, we are proud that his long hours go toward an undeniably good cause: to save the lives of children with heart defects. But now, in the middle of the COVID-19 pandemic, Dave’s career is risky because he is the…