Our story begins in June of 2019. It was in the lazy morning hours late in the month when we were startled awake by the sound of gurgling and violent shaking. A rarity at the time, both kids had climbed into our bed sometime through the night. We lept up to find Isaac, 4 at the time, in the throes of what we later learned was a tonic-clonic seizure. Our worst nightmare was right in front of our very own eyes - one of our children was suffering and we were helpless to stop it. We called for emergency services and they responded shortly. By the time they arrived, he had stopped seizing but his breathing was still stilted and labored. We decided to go into the emergency department. By the time we arrived, he started to regain himself - about 45 minutes after the initial seizure. Several appointments later, we clung to the 70% chance that this would be his only seizure. 

Several months later, while Steven was on the road, Isaac had once again climbed into bed with me. He woke me around 4 a.m. with another seizure. Being alone with both kids, I had to drive Imogen and I behind the ambulance transporting Isaac to the emergency department. We started him on a very low dose of anticonvulsants and awaited further testing. 

Diagnostic imaging revealed what we have come to believe was a Dysembryoplastic Neuroepithelial tumor, DNET for short. If one must have a tumor, apparently this is the one to have - benign, slow-growing, and virtually symptomless. Except they are known for causing seizures.

This was our new normal. 

Isaac continues to receive care from his amazing epileptologist at the University of Minnesota. He has had one additional seizure since this started, but we monitor his weight to ensure he is getting an adequate dosage of his anticonvulsants in order to prevent additional seizures.

This will never be normal for me and I doubt there will ever be a day where I don't call 9-1-1 after he has had a seizure.

And so we walk in hopes that science will find a cure - not just for our son's form of epilepsy, but for all types of this disease.