Today. March 5. One year of no seizure activity. None in the day. None at night. And my favorite…no tonic clonic. 🎉🎉🎉
I thought we were in the clear, I had let my guard down. Then it came with no warning. This time one year ago we were in the hospital…she had an early afternoon seizure that lasted somewhere between 6-8 minutes. I’m not sure how long she was seizing before I saw her. She was napping. Possibly anywhere up to 2-3 mins so that’s why I’m unsure of the duration. Unless you’ve experienced it, you can’t fathom what a lifetime it feels like watching your child convulsing while gasping for air, foaming at the mouth and turning blue knowing there is not a thing you can do but wait for paramedics to arrive. She seized all the way to the hospital in the ambulance, was still having a seizure upon arrival and still activity over an hour after it started at which time they administered meds via IV to stop them…but the first dose didn’t work so she received another. I thought we were going to lose our baby that day. And I thought for hours after that she had lost function we would never gain back again. Talk about an exaggeratedly long, odd and petrifying postictal period. The weeks to come involved arming ourselves with tools like seizure cams, seizure protocols, seizure bags with rescue devices and meds, oxygen tanks and pulse oximeters. Never again will I be unprepared should I need those tools.
Most of you have no idea this even happened. I couldn’t bring myself to relive it to talk about it. I had this whole post about this I was working on in preparation of today, but I can’t finish it just yet…at some point maybe I’ll get around to sharing the depths of how this event changed me, how it robbed me energetically, emotionally and spiritually for months, wounded me with PTSD and how I’ve been gradually breaking free from the claws of fear…it’s been a journey no doubt. It will be part of my healing journey to finish writing about it. Hug your healthy babies tonight. I’m hugging mine 💗