Yeah, so I was wrong.
I said the waiting was the worst part. Now, as we’re something like halfway through Day 3, I have realized the truth.
Waiting sucks. But what we have to do to our daughter is worse.
Do you know why the average hospital stay for long term monitoring is four to seven days? I do. Because it can take that long to push a resistant mind into giving us what we want.
An episode. A seizure. A whatever the hell it is.
At home we spend most of our time actively avoiding things that might set off whatever is going on in Amelia’s head. That’s why we’re here — to try and make it stop. And how do we do that?
By pushing her into making it happen.
Five minutes ago I told my daughter she couldn’t watch her movie or play with her dolls anymore. Why? Was she a bad girl? Was she misbehaving or playing with them in some inappropriate way? Nope.
I just needed to piss her off.
I could see from the look in her eyes that she was teetering on the edge of an “episode”. So, as her loving parent it was my job to push her over the edge. To get her so worked up that she started yelling at me and kicking me and crying uncontrollably.
I took the dolls and the crayons and the iPhone away. I yelled at her and told her she was going in timeout. Just so I could push the red button and mark her EEG for review.
It was the third time we pushed that button since we’ve been here. Each time Amelia has been a bit worse. At some point, today or tomorrow or in a week, she’s going to crack and unleash a Chernobyl level meltdown. Until then, it’s us against her will. Is against her determination to be a good girl. Us against everything we want her to be, everything we came here to help her be.
She asked me, after I had calmed her down (from the upset Icaused) if she was being a good girl now.
All I could think was “yes, unfortunately”.
Someday Amelia, you’ll understand why mommy and daddy really are being “meanie heads” right now.
But today is not that day.
And that’sthe worst part of it all.
Christa
January 19, 2012
It is so heartbreaking to read this. Especially as a parent myself. I can’t even begin to imagine how hard this is and I am so sorry that you and your little family has to go through this. I hope you get to the bottom of this and soon! xoxo
Ivanna E.
January 19, 2012
I can tell by your writing that you are a strong woman. And you have a strong little girl there. I’m praying for your family!
Ivanna E.
January 19, 2012
strong man* (sooooo sorry)
squishy
January 19, 2012
those of us who love you wish we could do something to help you.