Saturday, May 30, 2009

The Best Laid Plans

I don't mean the best plan to make for getting laid, I mean that you start out planning to go one way and then end up going another. I had started this blog actually earlier in the day, and I was planning to talk about upbeat things...

But it's difficult, when you are going through a thing like we are, with a child who has a severe illness, to NOT focus on the negative parts of life. It's where you are in the head. You try very hard not to, you try to cling to the good and minimize the bad, but you do spend most of your conscious time feeling down.

Consequently, if you are a 'Blogger' or if you keep stuff updated on something like Facebook or Twitter, the flavor of most of your posts is going to be negative as well.

So I was gonna buck the system tonight, I was gonna say 'TO HELL WITH THE DOWNBEAT STUFF'. The PLAN was to talk about some hopeful subjects like Sophie's surgery or Danielle's new nickname, or even the stuff we have planned for this coming week in Detroit, and I also planned to show some video I took today of the kids. Not video of a seizure or anything like that, just them 'doing what they do'.

I shot the video during the morning, thought about what I might say in the blog which I intended to scribe after dinner, but then, of course, a mighty cluster of seizures ROARED in out of NOWHERE during said dinner. The seizures were so bad that we needed to get him out of his high chair so he would not head butt the high chair tray and wind up with a face covered with pieces of cut-up cheeseburger.

Now he's off to sleep for a while, and Jen is trying to catch a quick 20 minute power nap. Carter is back to his 'movie' he wanted to watch, and I am sitting in the middle of the kitchen, alone, the sound of Top 10 All-Time Dallas Cowboys on the NFL Network softly in the background (Tom Landry number 1? COACHES SHOULD NOT BE ON THESE FUGGIN' LISTS), surrounded by the remains of a deserted dinner, that nobody really felt like finishing and I don't have the energy to tackle cleaning up at the moment.

That is the way people like us live right now. There is no 'normal' activity, not when, at any time, something can just happen to turn everything on its ear.

But there were those moments today, when Bennett was awake, that were special, that were funny, that were charming. Carter made me laugh quite a few times until later in the day, when he decided he would not nap and then turned into the Mirror Universe Carter. The one with the goatee and the Agonizer.

But there were good moments. They DO happen. They are just so much harder to appreciate after a dinner like that.

Like this one...Carter and Bennett interacting a little while Carter watches cartoons on Saturday morning.

I just had images of that pretzel causing a Rancor moment and locking his jaw in place, so I had to grab it and exchange for something else.

Or this one of just Carter, mainly for you, Mom, until you get your Skype and camera up and running...

Or this one, of Bennett. No seizures, just him exploring. He is actually being even less jabbery here than he had been but I wasn't able to get it on disc. I do see how he tries to process the word 'Dadda' and eventually does. But when he does, he smiles.

Which of course always makes me smile too. What a precious boy, he does NOT deserve what is happening to him. But then again...who does?


  1. Kenneth, like you, I am anxious to get my camera in place!
    Carter, Grandma & Pops love you!
    Bennett, illegitium-noncarborundum!!

  2. Ken, loved watching the video of your two beautiful boys. Constantly have you guys in my thoughts and prayers and hoping that something positive starts happening with Bennett soon. If you need anything, just ask.

  3. Okay...since I can't seem to think of anything at all worth saying really...I should probably nix the whole comment idea totally!
    I guess I'm just thinking that you're in the beginning of this. This is truly THE hardest time. When you go from having no clue what the heck IS watching it consume your child right before your eyes. And that sucks. And tears your heart out.
    But it does get better. Not easier really. I think it's that you "grow" into it. And you pour yourself into positive educating other new parents. And sharing from an honest place. Btw...I like how you're organizing the info on your front page. For months & months...that is how I kept my sanity. By feeling like I was doing trival as it may was something. And that helps make it easier. For me.
    I also think it helped me to have other children. Toby & Bristel force me to not stay in a puddle for too long. Because they need me too. As I'm sure Carter does for you. Even when driving your bonkers. I laughed SO hard when Bennett was following Carter...that is totally Bristel & Trevy! Which...Tobes & Bri had a really hard time in the beginning. But slowly I've seen them adjusting...and this is becoming their normal much like Cynthia shared. Now when Toby prays he thanks God for giving Trevy to us...because Trevy is so special. And Bristel says she wants to grow up to be a baby doctor so she can take care of babies with seizures. And I totally have no idea why I just babbled that. *grin*
    I shoulda just emailed you. But it drives me nuts that I can't get your responses. Don't you think it's time you got a real email addy??? *wink*
    Hope your Sunday is sweeter than it is bitter. It gets better...I promise.



  4. Ma:
    Lemme know when you get it going. Tested ours with Carter, he was fascinated with seeing himself in real time.

    Will do, thanks. How's he East Coast treating you? Sniff...miss it...

    That's actually a very re-assuring thing to hear, and something I have to remind myself of often, so thanks for doing it. It is early, and I do have a long road, and adaptation will occur over time, I just have to get from here to there.
    Thankfully, as of the end of today, May is at an end, and I knew it was going to be a difficult month because of the limbo time. But in June, more is going to be happening to get closer to answers and plans, and that's all good.
    E-mail me again, I'll send you an alternate address that might work better for you. I keep the one I have because I know it will never change no matter where I move to and it can process any size file and stuff.

  5. Oh, and thanks about the blog interface...I keep tinkering around adding to it, and you are right, it does help.

  6. I will be thinking about you all this week any hoping you get good news (something you can work with) in Detroit. Hugs to Carter. It will be hard for him too.

  7. Ditto to all Danielle said.

    It doesn't get easier, you just learn to compartmentalize. YOu store away the bad "stuff" and learn to only bring it out when you can focus on it. And the good stuff comes back to the forefront.

    I can't see the videos, but I am sure they are cute!

  8. P.S. Your subscribe to "all comments" button doesn't work. It re-directs to the actual blog feed.

  9. Never mind, it works for those not computer challenged this Monday morning. :)

  10. I totally need to figure out how to use the subscribe to thing-a-ma-bobs!

    and K...I'll email you later. I also have an that could be a better option?


  11. That's actually easy. You can use the Follow button on my main page, which should walk you through it, OR, if you want to do it a different way I can walk you through it visually in an e-mail. It's also a way to follow a blog even in Wordpress, like Liz's, even though Wordpress doesn't have the 'follow' function on it as a feature.

  12. I'm still kinda learning this new adaptation thing, so I don't have much insight to share.

    But, one thing I've noticed...

    Even though it never stops hurting, you start coping better. You really do get stronger. More determined. And much more appreciative of those little moments than you ever believed possible.

    As cliche as it sounds, one day at a time is the best coping mechanism. It keeps you realistic..more optimistic..and in the moment.

    By the way...after reading about the high chair cluster I was wondering...does Bennett's high chair have a shoulder harness? That really helps. I won't put Austin in a seat with a tray without one.

  13. No plans in MY house....I USED to be able to plan things before "The Beast" struck...But no more...I am SO THANKFUL I am a homebody at heart! When things are bad, it is easier to just hang out at home...You find your little ways and little routines, though they vary, as you described so well...

    I think you and Jen are AMAZING...Y'all ARE adjusting to the ebbs and flows of this puzzle we call our life! Once there is a definite plan, though, I think you both will feel more in control...That will help...

    Thanks so much for the beautiful videos! How proud are you of those little guys??? Seem like typical brothers to me!!!

    Thanks for the post...


  14. That is the thing about your child having daily seizures...the best laid plans go out the door when the ugly seizures start. There have been so many days where I was so happy and Sophie was so happy and we were playing together and then...bam...a cluster hits and she is cuddled in my lap recovering and I am a sobbing mess. You just never know when they are going to strike. I loved the videos. Thanks for sharing. I can't wait to meet Bennett in person...even though he will probably be connected to an EEG. I was thinking I would come by sometime tomorrow. We are on the 6th floor. Sophie's drain is suppose to come out tomorrow so I am hoping we will be able to wheel her around since Bennett won't be able to leave his room. I hope that is okay.


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