So....last night was a little rough. Amelie is having constant seizures. I think she slept soundly until about 3am, when I woke up to give her nightly med dose, I noticed her eyes were wide open. WIIDDE open. Her heart rate wasn't elevated--so here's the thing: she's now having seizures with a normal HR. So she could have been seizing all night, and the puls/ox wasn't alarming, the settings were not adjusted for that. And this seizure lasted almost 30min. I woke up Boss, I couldn't handle it alone. Her breathing was ok, strained, you could see her chest really working hard. I laid next to her, held her hand, and Daddy knelt down on the floor, holding us, talking to her, praying. It was a beautiful moment, but started the stressball in my belly again.

I was up from 3am-7am watching her, she had two more short seizures, needed some more meds, frequent suctioning, but slept until 8am. wherein i promptly collapsed.

Unfortunately, Amelie has been having seizures all day. We've been pumpin Versed and CBD, and they've slowed a bit. Im gonna be honest, we don't know how to process it. or what to make of it all. Lulu doesn't seem like she's in pain or suffering though, they're not violent serizures by any means. Maybe this is the new normal?

You know, the Bible says "Do not Be AFRAID" a lot. It was, and still is, my favorite song growing up in Catholic Church. I sang it to Amelie every night in the hospital. "BE BRAVE" is my personal motto for Pete's sake. Yet, it's funny how fear can just swallow you up, if you let it. or, even worse, take up permanent residence within your being, like an unwanted house guest or the ex that just won't move out after a breakup.  I have a newfound, gut wrenching sympathy for parents with children of seizure disorders. Not being afraid of a seizure is like not being afraid of a tornado.


Expose yourself to your deepest fear and fear will be overcome....You are free.
— Jim Morrison