It is early morning and Andrew and I are in our kitchen. I’m standing at my island chopping up the tomatoes I’ve collected from my garden this week, and bagging them to freeze. Andrew is across the island from me sitting in his wheelchair and keeping me company. While we work, we are listening to our favorite 80’s cheesy country songs on YouTube. This is our happy place, together cooking in the kitchen listening to music. Andrew is alert, his eyes open, and in his own way he is singing away. He absolutely loves music. But I am aware of what is coming; I’m always on edge for what is coming. Frankly, I’ve have been on edge since Andrew was diagnosed with Lennox-Gastaut Syndrome (LGS). Daily seizures shocking Andrew, and even possibly ending his life leave me as a caregiver always anxious, and also extremely disheartened.
Within 15 minutes or so, the seizure strikes. As I said, I knew it was coming. It is strange. I can sense it, feel it myself. Andrew’s arms stiffen and shake violently, his face turns pale, all the color gone from his face, he gasps for air, his breathing stops completely, his toe gets jammed into his footrest. A tear drops out of his eye and rolls down his cheek. Within 60 seconds, the seizure I’ve been waiting a few hours for is over, but the side effects remain. Andrew isn’t singing anymore. He’s shocked, yawns and ultimately he falls asleep. The happiness in the room is now gone. Just like that.
I’ve gone back to chopping tomatoes, but I am down now myself. Every single time Andrew is happy and engaged, he seizes. It’s heartbreaking. Andrew will likely seize 5-10 more times in the same way for the rest of this day, and if he doesn’t, well that will put me on edge too. With LGS, ever-changing seizures are the norm, but it's nothing one can ever get used to. Not one day is the same as the next. Will Andrew have a good day today, or will he have an unexplained bad seizure day? Will seizures cause Andrew to stop breathing completely? How have the daily seizures affected his development and his ability to live a happy life? Am I doing enough for him? Maybe I should try that new med? Maybe I shouldn’t be playing music at all, that excitement may have brought him to seize. Did I feed him too much sugary chocolate yesterday? The questions are endless in my mind, and they are with me all of the time.
This lifestyle has taken me so many years to get used to. Andrew is 18. He has many challenges. Andrew cannot walk, or talk. He doesn’t see well. Seizures, however, are the challenge that affects him, and me the most. He’s a young man now and we have tried most all the medications there are to try. Over the years, we’ve tried all the therapies and special diets that are available. There has to be something more.
Being Andrew’s mom and caring for his needs take up a huge part of my life. Following the latest research on LGS is often on the bottom of my day to day list, and frankly the science behind epilepsy research is a lot for this mom of four from Maryland to understand. I do know there are activists, scientists and geneticists working their hardest to help Andrew and others like him. Those making a difference in the epilepsy community are where I reach for my strength on my hardest days. I am holding my faith in the researchers and that they come up with a cure to lessen the devastating seizures that take away the joy from so many.