But I DO get the notion...how someone might be hesitant to reach out and contact because of concerns of how we are doing at the moment. There's some hesitation about whether our sleep schedule is weird or Bennett's, whether we are overwhelmed with his care currently. Some people just don't know what to say, and they want to stay connected but think it might bother me to hear the same kinds of supportive things said over and over.
Trust me...I never get tired of the support and neither does my wife. What's funny is that we actually feel bad about not giving people good news because we know that many of you are very deeply hurt by this, and we're normal...we hurt when people we love hurt just as people who love us hurt when we hurt. (What did I just say? Now my BRAIN hurts...)
So he's taking this drug called ACTH, and a very expensive drug at that. See these Questcor drug guys raised the price from roughly $1000.00 dollars per vial to $23,265.00 dollars per vial, but I am not gonna go down that road right now, makes me too freakin' mad. So he takes this drug and has been taking it since late Thursday night. It's considered by many docs a first line treatment of the seizures.
The rub is of course that we, and no one else, knows if a) the drug will work and b) if it does work to stop the seizures if would still require surgery in his brain and c) if it is to stop the seizures right now when is it gonna actually happen? When are we gonna SEE the change ala no seizures? Yeah, fun ride ain't it?
Do I sound angry today? It's cause I am. See, he had a seizure yesterday morning, around 10-ish or so, but then he didn't have one at all the rest of the day. Hmmm, interesting to say the least. We get up today, no seizures at all in the 10 o'clock hour, which is a time he usually has one. Hmmm...11:00 comes, 12:00, 1:00....I'm thinking..."Is this gonna be the day? Is this FINALLY gonna be the day he doesn't have any at all?"
Then it's 2:00, then it's 3:00, and I gotta be honest with you, I was feeling VERY optimistic. I mean c'mon...it had been OVER 24 hours since he had a physical manifestation of this thing, could that mean that the jumbled activity going on inside was also subsiding? Could this be the beginning of an upswing here?
3:24 in the afternoon, and there it is. Back again.
It's sort of like being punched in the stomach when you aren't looking and aren't set for it. I mean, even when you are ready for that punch it hurts, but when you are NOT ready? You get the wind knocked out of you. But even that isn't an analogy that serves this well at all.
You get the soul ripped out of you.
You sit there, staring off into space, not sure how to process the feelings in your head that just went from hope to fear, from joy to sorrow SO fast there isn't a device to measure that small of an amount of time. Your will to continue to move through time to the next moment and the moment after that is severely weakened but you know you had better find some motivation to keep taking those breaths because you have to be there for the people that need you. You want to scream, you can't. You want to cry, you already are but you hold back the floodgates cause you don't want to freak out your other son. You want to tear something apart, but you have to stay cool.
This is just such a big pile of shit. Sorry, I know it's a family show, or supposed to be, but that's just how I feel right now...like shit.
I took this photo of Bennett yesterday. He was actually playing, having a good time, giggling and laughing, but there was a moment, this moment here, and my camera happened to go off during the moment. I'm showing the photo because when I look at it it symbolizes a lot of my own perceptions of how alone he really is right now even though he can't realize it, and it symbolizes how helpless I feel because I can't stop this thing in his head.
Anyway, that's the latest...maybe tomorrow will be a better day.