I remember as though it were yesterday laying my adorable 4-year-old daughter, Gabrielle, in her bed and watching her fall into a deep, peaceful slumber. An hour later, my husband and I heard unfamiliar noises coming from her room and we sprinted there to witness her small body shaking uncontrollably, her breath irregular and raspy and white foam coming from her mouth. It was horrifying. I felt frightened then because I didn’t know how to help my daughter, and sixteen years later, I can still feel that fear.
November is National Epilepsy Awareness Month, and our journey is just one of many. Gabrielle has seizures daily despite the many medications we have tried, the special diets, the food restrictions. Neurotelemetry indicates that Gabrielle is having seizures twenty four hours a day, presenting outwardly or subclinically. Typically, the seizures don’t stop on their own and require emergency medication intervention. While our family has become comfortable and somewhat immune to these daily occurrences, Gabrielle’s seizures are cause for alarm for others, especially at school. Because they’re afraid, just like we were.
As parents, Jack and I have learned to be persistent advocates for our daughter. It took years for her school to stop calling us to come and pick her up after she’d had a seizure or taken her emergency medicine, but after several conversations with the school personnel, fire department, neurologists and the Epilepsy Foundation advocate, we finally won.
We’ve had many conversations with children, too. I usually explain that seizures are like an electric storm in the brain, and that while they can be scary to watch, there are things they can do to help. I advise people to stay calm, reassure the person who is seizing, to not restrain them and to remove objects that could cause injury, like a pair of glasses. Turning the person on their side will allow any secretions to flow from the mouth. You should always call 911 if the seizure lasts more than five minutes, especially if it is the first you’ve observed.
Gabrielle’s condition allows me to teach others, and merely having her in their lives has been a teaching experience for her teachers and friends. When Gabrielle was in sixth grade, a classmate named Trevor befriended her and helped her when she needed assistance. Trevor’s mom told me a few years later that he saved his brother from drowning that summer because he had witnessed Gabrielle having seizures, and he was able to recognize the symptoms and knew exactly what to do. Powerful stories like these are worth sharing every month, but especially this one.