Wednesday, March 18, 2009

Getting Punched in the Stomach

Thought I would give an update on Bennett, since I haven't devoted a blog exclusively to him in...what, three days? And I am doing this mostly for the people who have been letting me know via comment, e-mail, phone and whatever that they like to know what is going on in an up-to-the-minute-fashion but also don't want to 'bug' us by calling, writing, etc. First of all, it ain't like anybody's buggin' anybody, but that's neither here nor there.

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.

16 comments:

  1. I just can't say it enough times how my heart weeps for all of you

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  2. I know it does. You think I should stop writing about it? I have mixed emotions about whether it's doing anybody any good.

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  3. Ken,

    Our (yes Dawn is reading your blog now too for updates)hearts go out to you and Jen and the kids. If there were anything we could do to help make your pain go away please know that we would do it in a minute.

    Josh

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  4. "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."

    this...yeah.....that's about how I feel. But don't stop posting about this stuff...we all care and want to know and I think it's good for you to talk about it too...plus you can vent on all us internet types without putting your immediate family under more stress.

    every day I think about this and pray man...

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  5. That picture... We just cry, pray, and hope for Bennett, you, Jen, and Carter. Our thoughts are with you - Sam and Tori keep asking me for better news. Sam cries and it makes her mad. Wyatt just wants to know when Carter can come back to play at Mema's. Oh, to be that oblivious... As soon as we are all germ-free, we could take Carter to play. We love you guys.

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  6. Oh what I wouldn't give to be Bennett's rag man... http://www.angelfire.com/tx2/jbrown/ragman.html

    Your words describe me perfectly "Some people just don't know what to say..." I have been weak and selfish allowing my mild uncomfortability to prevent me from telling you how often you have been on our hearts and how much we love and support you.

    The courage and strength you are meeting this challenge with outshines any of the superheroes your blog so regularly speaks about...

    All our love...

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  7. Should you stop writing about your son? Please don't. At some point not too far in our past, being human meant being a part of a community. As we have "progressed" so much of that sense of community has faded. But I think it makes us better people when we learn to care, to reach out beyond ourselves, and even bleed a little for someone else. It is uncomfortable and hard--for you and your readers. And that is the first clue that something valuable is happening here. Writing your story takes such courage, Ken. The ultimate act of vulnerability and strength.

    Those who love you want to stand beside you through the hard times and when the time comes to rejoice, their happiness will be that much greater because of the pain you have allowed them to share with you.

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  8. You should definitely keep posting about Bennett, because we do want to know, and if you weren't posting about him we would want to know how he's doing but be tentative about asking. Also - blogging is free therapy. It does help, I promise, plus I know it can be difficult in situations where your loved ones are under a similar pressure as you to talk to them about it. We're here and ready and happy to take whatever you want to throw at us.

    Best wishes to you and your family, and I do think it's a positive thing that he went for almost a day without a seizure before having one - I don't think I've ever encountered a medication that stopped something point blank. It usually seems to phase out and take its time when its working - its still a lot longer without a seizure than usual, so somethings happening.

    Good luck, Ken. We're thinking about you.

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  9. Do NOT stop writing about it. First, I'm sure I'm not the only one who CARES but wouldn't know how to contact you directly and wouldn't consider it. I'm too far away to do anything constructive like entertain worried older brothers or bring over dinner. But I'm thinking about Bennett and you and Jen constantly and I want to know. I want to at least be able to follow along and send supportive thoughts.

    I'm hoping the longer span you got yesterday and today is a positive sign, that the ACTH is starting to help and that you are going to get good results.

    I've also gotta think writing it down helps you, at least in some small way. Lets you get some of it down here, where you don't have to be strong for your kids, and creates a venue for us to offer support. It ain't much, but a lot of people care and that's something.

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  10. Please don't stop writing about it. We share in your heartache and maybe through sharing, some tiny bit of the burden can be lifted from your shoulders.

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  11. Thanks everybody. All good advice, I'll take it.

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  12. My God Ken... I've been away from your blog for about a week and am just catching up with everything you and your family are going through and I'm sitting in my office at work with tears running down my face.
    I can feel your frustration, fear and pain in your writing.
    I will absolutely keep you and your family in my prayers.
    If you need ANYTHING, this isn't just lip service, if you need anything please let me know! Even if it's just as simple as you need a copy of Dead Space or some other EA game just to take your mind off of things for a few minutes. As a parent I know how deeply these things cut. Keep your head up friend.

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  13. Thanks Daniel...I appreciate your offer. I do have an X-Box 360 and always forget you have access to games, but would feel weird about asking anyway in these circumstances. Thanks though dude.

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  14. Keep sharing, Ken. You've got my sympathies (and Collette's). If "Knowing is half the battle", its a tougher battle when you don't know yet just what's going on.

    I just hope the docs will work out what's going on. Those tiny humans change on a dramatic, complex biological level every day, and can grow into and out of things very quickly (at least, that's what I've been told by the children's hospital doctors I've worked with over the years). Every day is a state of flux, but then every day has a huge chance of positive developments.

    Stay strong, all of you.

    - AcroRay

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  15. Ditto to what everyone else has said - please don't stop writing about Bennett and Carter and what you're all going through. Even though I talk to Jen multiple times during the day, I need to hear what is happening from you too. By the way, I am very impressed with the way you and Jen are holding each other up through this. I've seen it first hand, one of you seems to remain strong when the other breaks down - that's a good marriage and a blessing in itself. Love and prayers to all of you.

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  16. I can't say enough about how hard this must be for you and your family. Get that second, third, fourth opinion if you haven't already. I pray the injections work. I pray he gets the right treatment and you do not have to endure this for any length of time. you are all in our prayers and in our hearts. i say you keep informing us this way, it is helpful for you, as someone else said cheap therapy, and you are not overwhelmed by a billion phone calls. I know you feel helpless but, keep your faith and keep praying he gets better soon. We are all here for you, if not in person, in spirit and to help you through this. Hang in there.

    Laura

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