10% Chance

From the beginning of the journey with Major’s seizure diagnosis, I have held onto the hope that we would see the light at the end of the tunnel just around the corner. Only 3-5% of children have febrile seizures. Of those children, most have only a few occurrences and outgrow them by the time they are 5-6 years old. Most never see multiple seizures within the same illness. A small percentage of those with febrile seizures are later diagnosed with Epilepsy. I suppose Major likes to test the odds because he has continued to push every margin.

Major’s EEGs were always “normal”, until 2023, 5 years post his diagnosis of Complex Febrile Seizures. The seizures themselves had decreased in frequency and severity. In May, 2024, we went for his annual follow up visit. Flying solo, I prepared myself to lure Major onto the table where the technician would hook up all the wires to him for his EEG. Five minutes in, it went from sweet bribes of “Do you want to look at the ABC book?” to a full on WWE match as the technician looked on with either pure fear or admiration.

“Are you ok?” He asked. Out of breath, I told him we were ready. Major calmed down, and with one foot barely hanging off the table and giving me the side eye, he laid his head back and I stayed in position singing a 20 minute version of the ABC song while we completed the test.

Following the test, his neurologist explained that 10% of children with Major’s EEG pattern had an onset of Epilepsy between the ages of 6-8 and outgrow it during their adolescence. It wasn’t the news I wanted to hear but I left the office hopeful.

Prior to this visit, there was a looming cloud of the unknown in our future that seemed daunting. Epilepsy was a scary word and the idea of facing a lifetime of seizures that could seemingly be worse from the ones we had experienced before was….heavy. I had created stories in my head of what this might look like in our future and I grew more and more anxious about it. As the doctor had explained what this type of Epilepsy looked like, the symptoms and the outlook, I started to close the door on many of these crazy chapters in my created stories and grasp onto these new facts. Besides, it had been over a year since his last seizure.

90%. Those were GREAT odds. A 90% chance it wasn’t gonna develop into Epilepsy.

Two nights later, Major had just fallen asleep and I looked over and he was having a seizure. It had been so long, it took me a quick minute to register my normal routine of grabbing his emergency meds and positioning him on his side. As quick as it started, it was over. His recovery was quick and he sat up groggy and confused. And then he laid back down and went back to sleep. Crap! For the next week, I watched him as he fell asleep wondering what the future of the next leg of this journey would look like. Would he begin to have these more often? Would they always be quick? Would they begin to happen during the day or only at night? I had to update his paperwork. I had to call his doctor.

Deep sigh.

But gosh…this really wasn’t the worst thing. Nothing like I imagined. And suddenly my perspective was shifting because there was the light again…it had never stopped shining but I just turned away for a minute.

I cannot guarantee Major’s future, what will come from his seizure diagnosis or even how his development will progress with his diagnosis of Autism. I do not hold tomorrow. But I will continue to have hope, to stay grateful for today, and shine.

Psalm 31:24

Be strong, and let your heart be courageous, all you who put your hope in the Lord.