Monday, April 20, 2009


Today is one of those days...and yesterday...and the day before...

Where I just want to dig deep down and pull out all the emotions and stomp 'em...

It's Day 5 on Banzel...

By no means am I expecting it to "work" already...

But I didn't expect it to get worse either.

This weekend proved to be a shaky one at best. Banzel seems to be quite potent for Austin...and not in a good way. He's been in and out of a zombie-like state...there's been cluster after cluster and drop after drop. I'm even scared to admit I might have seen a brief moment of another type of seizure. A calm but rhythmic twitch of his left arm while waking from a nap.

I'm terrified...and torn...and emotionally spent.

In the front of my mind, I'm dealing with the constant-never-ending-spasms...delay after delay...possible deal-breaking side effects from new meds...

And in the back of my mind, I'm trying to push out the reminder that we are approaching our one year mark to this nightmare.

But, like I said, first and foremost is to stop these stupid seizures...I'll have to sort through the rest later (emotionally), because I just don't have enough in me to face it all head-on right now -even though it's tugging at me like a bad dream I can't shake. I just have to keep tucking it back down for tomorrow.

The more I try to sort, the worse I feel. I wish it was as simple as dealing with it one day at a time. We all say that...but can't help but think about tomorrow.


Sophie's Story by Elaine said... heart goes out to you. Because I know how you feel. There are so many days I wish I could just crawl into bed with a bottle of booze and drink myself into a drunken stupor so that my head would spin for other reasons besides thinking about reality. To watch your child have seizures every after day after emotionally exhausting. To lose hope in yet another drug is emotionally exhausting. To realize that the one year mark is creeping up is emotionally exhausting. thing popped out at me when I was reading this post. The left arm twitch supports the right side abnormalities shown on the PET scan. Though, I am not saying the left arm twitch is anything as Sophie has never experienced that.

Anyway, big (((hugs))).


blogzilly said...

Wow, how you have held it together for as long as you have is amazing to me. I've only been at this a couple of months and already feel like crawling in a hole and pulling the sod over the top of me.

If I am able to hold it together as well as you and some of the others after a year? I'll be shocked.