Holy crap am I feeling negatively charged right now. Today (the 5th) is the two month anniversary of The Official Diagnosis, and we are coming up on the 3 month anniversary of The Beginning of the Infantile Spasms.
I've been angry, listless, excited, hopeful, crying, laughing, up, down and all around for the past few days, but no matter what the range of emotions I run, it always comes back to feeling LIKE SHIT.
It's been bad for me inside my head. Even enough to blop out what I had scheduled for posting on Wednesday in exchange for this little rant. I won't even bother with a new one on Wednesday, just don't feel like it.
I made a huge mistake a day or two ago, HUGE, and it has been haunting me ever since. Out of curiosity, I pulled up a couple of short videos of Carter, my oldest son, when he was around the same age that Bennett, my youngest son (the one with the Infantile Spasms), is now.
I wasn't prepared for that. Nope...not in the least.
My memory was apparently flawed, and Carter may have just been a very fast developing kid, and I even factored in the one month difference of Bennett being born a month early, but HOLY SHIT what a huge difference. What a giant, mountainous, enormous, gargantuan difference.
You stack that up next to the fact that Bennett has, since this whole Infantile Spasms ride began, lost every single word he ever uttered to where he barely says anything intelligible anymore and you can imagine where the fear-anger-terror-angst-depression-despair-worry-lost-uphill-battle-coming-apart-at-the-seams-devastation feeling comes from.
I'm scared. And I am tired of losing my kid right before my very eyes, little by little. Bit by bit. It's consuming the core of who I am. I gotta figure out how to stop that from happening, but I can't right now. I feel like a Zombie myself sometimes, more dead than alive really.
I knew May was gonna suck ass...KNEW it, but it's early yet and May is winning the battle right now. Gotta find something to give me some strength to keep fighting and beat back this month of May.
Something's gotta give.
And I just have a simple request of the Doctors and Neurologists and Epileptologists and Nurses and Staff who are SUPPOSED to be taking care of Bennett's care right now at our local hospital.
CAN YOU PLEASE PICK UP THE MOTHER-FUCKING PHONE AND FUCKING CALL US THE FUCK BACK!?!?!
We are beside ourselves, Jen and I, over getting the records we need transferred to where they need to be. That's one issue. That and of course they drugged the shit out of my son pretty fast and VERY strong dosing but so far no one has called us back to tell us what the FUCK we are supposed to do since the MEDICATION IS NOT FUCKING WORKING PEOPLE!!!
Appointments and plans and schemes made. Appointments and plans and schemes changed or canceled, no real explanations given. No real communication flowing.
And you know what...maybe I am making a mistake about blogging about this frustration. For all I know one of the people in charge over there reads this blog because they liked Kubrick figures or old Palisades Toys references or something and stumbled across it.
Maybe they think I'm a prick for calling out the fact that so far their services have been VERY under-whelming. Maybe I am actually hurting my own son's care by blasting away at how badly I think the team over there has been handling this thing.
Maybe...but I SERIOUSLY doubt it.
To be fair, some of the folks I have met there I have really liked and respected, and I still really believe in them. In fact, I would venture so far as to say if those people I am thinking of actually KNEW what I was feeling at this moment there would be some busting of heads going on right now. But somewhere over there, amongst everyone in that circle involved with Bennett's care, not everybody, but somewhere...a weak link has formed and it is affecting the strength of the ENTIRE CHAIN. It needs to be removed, period.
We don't need this...
We need THIS...
It's that simple.