The universe must have mistaken us for superheroes, because it blessed our family with two medically complex children. Each with their own extraordinary journey, similar in some ways, and completely different in others.

For the last couple of months, our sweet Jacko has been riding the struggle bus. After his ulcerative colitis diagnosis, things seemed to improve for a little while, but slowly we started to see things take a turn again. Deep down, my gut kept telling me this was GI-related, but the changes we were seeing had us concerned enough that we decided it was time to see a neurologist.

The turning point came on an unforgettable night when Jack woke up earlier than usual, extremely agitated. Normally, we can help him settle back down and get him to sleep, but this time he was not having it. Jack won that battle, and eventually we left his room and went downstairs to watch some TV.

About an hour later, Jack was perched on our half wall. I glanced over at him, and in a matter of seconds, everything changed. He vomited, lost his balance, and fell off the wall like a rag doll, hitting his head on the tile floor. It was absolutely terrifying. There was no instinctive attempt to brace himself or break the fall.

I ran to him, and there was blood and vomit everywhere. I screamed for Steve, we called for help, and Jack was quickly medivaced to Westchester. The doctors told us it was a possible seizure with a definite concussion. He spent the night there, had an uneventful EEG, received one staple, and then we were sent on our way, leaving with more questions than answers.

Three frightening episodes and multiple trips to the emergency room later, we found ourselves checking into the Epilepsy Monitoring Unit at Hackensack Children’s Hospital for a scheduled admission. After twenty-four hours of continuous monitoring, we finally had an answer: Jack was officially diagnosed with epilepsy.

Our neurologist has been incredible, patiently answering every question I throw his way, both the important ones and the completely ridiculous ones (and trust me, some of them are pretty wild). Even with a diagnosis, there are still so many unknowns. What’s causing the epilepsy? Will it become more aggressive over time? How long has this been happening without us realizing it? For now, the plan is to start medication and schedule an MRI, hoping it will provide some more answers.

The good news is that this is not a diagnosis we are unfamiliar with, so I am not walking into this feeling completely overwhelmed or afraid. The bad news is that my plate is already more than full. It’s overflowing. At some point, something has to give right?

Please continue to keep us in your prayers.