On The Edge

A sequence is an ordered list of numbers. Once you can define the sequence you can predict the next number. Coincidentally, it was the last unit I taught my class. I’ve been hardwired to recognize patterns but there’s one sequence that still makes no sense to me…

As of today, our little girl has reached an approximate seizure count of 202. The last one was in the car this morning when I was driving her to daycare. I constantly check on her while I drive in hopes to catch any signs of an oncoming seizure but just when I let my guard down, she let’s out a sharp cry. That cry rips through my heart each and every time. You could smell the adrenaline. I was in arms reach of my daughter but completely helpless. 30, 31, 32, 33, 34, 35… By the time I pull into the parking lot I’ve reached 45 seconds and gratefully, she’s out of her seizure. I take her out of the car seat and hold her tight, softly kiss her head, and whisper to her, “I missed you, thank you for coming back, everything is ok now, Daddy’s here”. Truth is, we can’t predict her seizures. We know what the triggers are, but we cannot predict when the triggers occur. We may go days without a seizure and then watch our darling girl go through a cluster. I’ve poured over the numbers in my head and I can’t find anything that resembles any sort of pattern. Frustrating!!!

Steph and I live on the edge every day. We pay attention to the warning signs. We appreciate the quiet moments but stay alert. We worry when it gets too quiet but still worry when things get too loud. We log every seizure and count every second. Her total seizure count is approaching the number of days she’s been alive and she had a 9 month head start. I’ve accepted the fact that there’s no predictable pattern. I can’t live anticipating the next seizure because she won’t have my undivided attention. There’s one thing I can predict: Our love for her and our son grows everyday. It’s a sequence that has no limits, no end. That is certain and that makes sense to me.