Our Journey with Epilepsy

 Epilepsy entered our life just over six years ago when my son, Axl, had a tonic clonic (grand mal) seizure in his sleep. It was early Friday morning, on Labor Day weekend and six-year old Axl had climbed into our bed at some point in the night. I woke up suddenly to feel his small body shaking violently alongside me. I flipped on the light and knew it had to be a seizure, although I'd never before seen someone have a seizure. He was grinding his teeth, making a strange guttural sound in his throat that I've never heard him make. His eyes were shut but his lids were flickering and his whole body was jerking rigidly. 

While I explained to the 911 operator what was happening, I thought I was losing him. At the time, I didn't know you could actually die from a seizure but I didn't know what was happening or when it would stop. It was so painful to watch my child seize and I felt utterly helpless. 

By the time the EMT's had carried him down to the ambulance, he was slowly starting to come around. My husband rode in the ambulance with him and I waited for my mom to arrive so she could take Axl's younger sister (who was still sleeping) to school. 

Once we were settled into the ER, they confirmed that Axl had endured a seizure but they said it was unlikely he would have another. A lot of kids have a seizure once or twice, then never again. He was back to being his normal, silly self, asking if he could have a mask and gloves and all seemed right once again. 

So they released us with instructions to make an appointment for a 1-hour EEG. When I touched base with my mom to let her know what was happening, she said Layla had refused to go to school, once she knew Axl wasn't going to school. So I went to pick her up at my parents' house. I wasn't sure how to feel or how to proceed at this point. Should we stay home and not let Axl out of our sight? It was a beautiful Friday in September and we now had the whole day open so we went to the zoo. 

I remember feeling like I was in fight or flight mode the whole time and thinking of what my action plan would be if he started seizing here at the zoo.  I was completely unnerved but the kids were having a great time and the alternative option to stay home and be scared all the time was not for me. 

We drank juices out of cute animal bottles, took lots of pictures and saw an amazing bird show. It was just like any other normal day and not like my whole world was crumbling as I had felt just a few hours earlier.  And then it was time to head home and everyone was happy and tired. 

It wasn't until 2 weeks later that Axl had another tonic-clonic seizure that he officially diagnosed with epilepsy.  During the next several weeks, it was like epilepsy just suddenly erupted in him and we observed many different types of seizures, happening at all times of day, without any known triggers. Over the course of the next several months and years, the seizures ebbed and flowed as we tried and failed different medications and tried combinations of different medications. 

Now that Axl is seizure free and at peace in his forever home with God, I often look back at that day after he had his first seizure. It was the most terrifying day of my life (thus far) but we had made that subconscious decision to not let epilepsy control our lives. Filled with fright and, quite frankly, ignorance, as we charted this unknown territory, we still wanted seize the moment and enjoy a beautiful day and not be controlled by this horrible disease.