Friday, July 10, 2009

Thank God It's Friday. NOT.


Maybe I ought to start having a warning label for content when I get into the really foul moods. So I made this one up. Nifty, huh? Yeah, fuck it.

Well, it's Friday night. Around 7:00. Carter is spending the night at his grandparents house, Jen is working trying to make up some lost hours, Bennett is sleeping off a particularly brutal set of seizures, and I am just taking a break from some work of my own.

Been hammered all week on some stuff, gonna get even more hammer time next week. My job is getting super busy. That's good, I prefer being busy to having my thumb up my ass, I just gotta figure out how to manage certain aspects of it somehow. I have two pages to go tonight on some notes and then I'm done for today. Yay for me.


But just thought I'd share how my weekend got started, even though both Jen and I have a ton of work we took a break around 5:45 and played with Bennett for a while as we contemplated what to have for dinner. But then he started having these....



Yeah...pretty much gonna have to declare Vigabatrin another FUCKING failed medication. Max dose and we've been on it weeks now. Still severe, still frequent. This was around 6:00 PM tonight, July 10th. Christ...takes the wind right out of your sails doesn't it? I mean...LOOK at that shit.

You poor, poor kid. But that was but a taste, I stopped the camera cause I wanted to try and hold him and possibly settle him, but he was far too agitated for this set and he was kind of pushing me away while at the same time seeming very distressed.

Here's another snippet from the same set.



Lasted in total around 11 minutes. Very shitty. Very hard to watch. I hate this thing with a mother fucking passion, what do you think of that? Don't like the language? Bite me.

Also, I just realized that not only did I forget to eat lunch, but our 'What's For Dinner' conversation took a back seat to Seizure Central, and now it is around 7:00 and I have not eaten. Feeling kinda tingly and lightheaded. Cool.


But...I am going to take some advice from a total stranger. I am going to think about ONE thing today that was positive, that made me happy, and write it down. I need to come up with a catchy name. A Smile Snippet? Nah that sucks...I'll come up with something later, my brain is fried from production notes.

OK...hmmm, lemme see. What made me happy today? Now mind you, Bennett had a doc appointment today I could not attend, I had too much to do, and I hate missing his appointments. He has a fucking virus, has some freakish name and hence spots of a rash all over him. And you know what a virus means, right kids?

Seizing like a banshee...not talkative, not playful. Pretty miserable.

Carter is gone for tonight, barely saw him today...but OK, Carter left Day Care Pre-School early today and went to the movies with his Mee-Maw and Pa-Paw and his cousin, and this was the first time he sat through the ENTIRE movie. Ice Age 3 I believe.

And? he loved it. So there you go, there's my positive thought for the day. Tony Robbins can SUCK IT!


That's it...it's my Tony Tidbit! That's what I'll call it. How's THAT for positive thinking, bitches! Nah...hate that name too. Ah fuck it.

I'll think of something when I am less mushy in the melon.

But I was happy to hear he had such a good time there. I'm happy for him. His birthday is Sunday. 5 years old. Wow.

I need to eat, seriously. Bye.


12 comments:

  1. I saw that comment on the joy post and I love the idea. I think it is a great way to try to find some joy in your day, which like mine is fucking miserably full of seizures. Good for you for finding a little mini-moment of joy.

    I hate the videos. I am so sorry. I hate seeing another kid with this. I hate all this shit. I know it has to get better, or at least some day I will be used to it. But I have hope it will get better for both of us. Late July will be here sooner than you think.

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  2. I see it, and it's awful. Your son is absolutely beautiful, and this is beyond heartbreaking for you, beyond any emotion that you can even put into words. (although you do a damn good job trying!) I get that, and I hate that anyone should have to go through this. Why certain people get chosen for this over others, I'll never know. But I would never wish it on my worst enemy so I guess there is no point in wondering that. And even if you can't believe it right now, there are a hell of a lot of people out there who believe that this will get better. It's not always going to be like this. It will get better. He has a spirit inside him that pierces through the camera, through the seizures. He will prevail.
    And good for you for writing about Carter's day at the movie. I think you are making a great move by giving that a try.

    Karen

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  3. Liz:
    How's your move going? Yeah...all this is such bullshit. No kids deserve this. Glad you liked my attempt at a positive thought. I'll try to keep that going.

    Karen:
    Appreciate it. Thanks for what you said about his spirit, I often think that but of course I'm his Dad...that's my JOB to think that. :)

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  4. Ken,

    Thanks for saying things that my "southern belle Christian upbringing" prohibit me from saying....Truly.....As I was watching Bennett's seizures, Colby chimed in with his own....Look at these two beautiful boys!!! I wanted to SCREAM!!!!! But all that would do would be to bring back the migraine I had just gotten rid of...So I let your post scream for me today...Thanks for that...

    I am so, so sorry.....It sucks BIG TIME....And No ONE will EVER know unless they walk in our shoes!!!

    (BTW, I know Tony Robbins does some wonderful things...But there are times I just want him to shut up!!)

    Cyndi

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  5. Those were so intense. I'm so sorry that Bennett has to endure these right now. Maybe once you start to wean the vigabatrin, the intensity will decrease. We saw immediate improvement on intensity with Austin.

    I hate that he seems so distressed during them too. That adds so much to the overall emotional toll.

    Just hang in there 'til the 24th. I'm hoping you guys will get some much anticipated answers then. Two more weeks...

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  6. This breaks my heart...I KNOW the drug battles..my Madie has been quite the Guinnie Pig for all these stupid meds...I hate the sparkle that left her eyes when spasms would strike...One day at a time. This lil one has already touched my heart. I Know the helpless feeling that comes with this..its the shittiest thing EVER! I dont even ask for much..just a chance for my madie..Detroit is carved in stone now...hopefully we can put a type to her twitches...hoping and praying we are not back to square one..Things will ONLY move ahead!
    Oh the Joys of Epilepsy.
    (((((HUGS)))))

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  7. That video made me cry. Poor little guy. His eyes just broke my heart - I just wanted to pick him up and squeeze him tight and somehow make it all better - I can't even fathom how you, as a parent, must feel watching him go through this.

    I liked your positive thing about the day, too. Having a kid old enough to sit through a whole movie is a real milestone! My kids saw and loved Ice Age 3 as well. I can't believe Carter is almost 5 - it really doesn't seem like that long ago you had him!

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  8. Oh Ken- it broke my heart to watch these videos- i can't imagine what little Bennett has to go through all of the time! God- someone has to find something to help him- it's just not fair! He is a beautiful boy!

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  9. Happy Birthday to Carter. I am glad he got to see a whole movie. I remember being taken to The Jungle Book at his age and only staying awake for a couple of songs.

    I am, as ever, so sorry for what little Bennett has to endure. Hoping for an end to all seizures for all people.

    I hate cortical dysplasia. I despise infantile spasms.

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  10. Trevy hasn't had nasty distressed clusters in awhile. But those definately mess with your mind and heart. And steal the joy from what should be joyful.

    I was just thinking yesterday how normal life can be when the clusters are just mild. And there's no crying involved. I hate the crying. It struck me as bizarre that the thought even flited through my mind. Like life with clusters of seizures can feel normal.

    I'm sorry, Ken. It sucks. You know that.

    ...danielle

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  11. Cyndi:
    Tony is a good guy...wacky yes, but hell, he lived his own dream that counts for something.

    Holli:
    Yeah, he is distressed, and that is happening more and more often now, which is why I am having a harder time with anger management, depression management, etc. The more they hurt him, or seem to, the more they derail me.

    Jamie:
    Glad Detroit is carved in stone for you. I liked Chugani a lot, personable guy.

    Maria:
    Hey thanks for stopping by. Yeah it is heartbreaking. I actually refer to you in tomorrow's blog (Monday) about those old message board things of Carter you saved for me.

    Robin:
    It is VERY rough yeah...

    Sinead:
    I'm with you on the hatred of CD and IS. :)

    D:
    Yeah Bennett hadn't in a while either, but they are coming back, more frequently too. Waiting two more weeks to get in up there sucks giant balls.

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  12. Good thing English isn't my first language, or the language I have to speak everyday, because after I saw the videos, the word "fuck" seemed to be like every other word in every sentence I thought, or said.

    I have seen Bennett's videos before, and even though they are painful to watch, I'm very clinic about it, because I always had a shitty health, and I had to develop my renowned tough skin, I believe by now I can give a Rhino a good competition.

    But hell if I could stay cool, call and collected when he started whimpering. That was my kriptonyte, because that showed to me, that on some lever Bennett "knows" what's happening to him, and he's not happy about it.

    Until now the in the videos I've seem he was virtually unscathed, by the seizures, but here we clearly can tell he's getting upset, and frightened.

    Ken, keep up the happy thought, and the clapping, because those seizures you and family have to endure are worst than saying "I don't believe in fairies" because it's not "someone" out there that is being affected by it, it's your own flesh and blood. And that's pain I which I'll never endure. I can handle my own pain, but someone else's, especially someone so frail and innocent, that would be a killer.

    My happy though for the day: My ulcer could have perforated, but it didn't.

    Live to scream another day.

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