Sunday, August 23, 2009

Tick Tock...Tick Tock

So is this how it's going to be? For the next few days? Just a bone-jarring sense of each click of the second hand on the clock? It's excruciating. I've been trying, over this weekend, to keep myself as busy as I can possibly be. Tons of stuff that I had left undone to have at the ready should I be in need of distraction.

And I'm doing all of it, and yet, there it is, that tickle in the back of my mind, that reminder that in 4 days I will be pacing in a surgical waiting room while some people dig around inside my kid's skull. No matter what I try to do to take my mind off of it, I think of little else.

Bennett did up at the Urgent Care today, and it had nothing to do with his tumor or his dysplasia or his seizures. He pushed himself with his feet away from the table and the chair he was in toppled over, and he smacked his face in the same general location as his last black eye (which had almost healed by the way).

There was some blood, though he was pretty at ease for a kid who just got a cut near his eye, very little crying. The cut, while not overly serious, was worth a trip to the Urgent Care to use some skin glue to make sure the laceration stayed closed and healed fast. They did the usual checks for concussive behavior, there were none. That was around 2 PM Sunday. As of 6:30 PM he is acting just like he always does.

One odd thing to report, and this is what always fucking just blows me mind into bits. His seizures are starting to diminish in intensity and frequency. So, we got this full-on brain surgery going down, and the week of the surgery the seizures decide to calm down? I mean, you gotta be shittin' me right? I needed some OTHER reason to second guess my decision to let someone slice open my son's head?

I shake my head and chuckle at that. Sometimes, the ironies of life just have to be laughed at.


  1. the waiting is so hard! I feel like I can deal with anything, except for the few days leading up to a surgery or some other major treatment. You have to be so strong for your kid, but inside I feel like Freddy Kruger is about to leap out of a closet with a hatchet at any second.

    Hang in there, Pop.

  2. That is too funny that the seizures are calming.....maybe the Lamictal is doing something then. Hopefully you can get off the Vig and maybe the wild nights will be a thing of the past. Then maybe the Lamictal will be good for you going forward.

    You know whatever is in there needs to come out, no matter how the seizures are this week. Life just likes to be tricky like that, to give you a reason to think twice....but you know y'all are doing what needs to be done. And hopefully you'll feel that way once you are back at home watching the healing really start.

    Sending prayers and lots of positive thoughts your way all week!

  3. I can tell you one thing, when I was a kid, I was always getting sick, but the day before I had to go to the doctor I was always better, and I mean really better. The day after, I got right back at feeling like crap!

    Forget the clocks, as much as you can.

  4. I've never minded the clock in my head, it's the roller-coaster in my stomach that kicks me! I'm glad you have some help with that.

  5. So thankful that Bennett's boo-boo was just that....Been there, too...(Colby fell w/a seizure in January and split his chin wide open)...But Bennett's was just a "normal" childhood thing!! NOT seizure-related....What? Huh? What is THAT?

    I can't even begin to imagine what the waiting is like...

    So, now Bennett is behaving and having less seizures and really screwing with your head...But it really isn't optional now, right? He's got to get that FLT (Funny Little Thing) out anyway, right?...So try not to second guess anything...

    But it figures.....These kids will do it to us one way or another every time!!! (@*&$%*#@!!!)



  6. Emma dropped in seizure count and her hypps went away before surgery. Figured she was messing with me. I knew the FCD was not doing her any good as you know that tumors are not things we like in our heads.

    Sorry Bennett got a bang on the head. Hate taking them near a germ fest (medical facility) before surgery. I was so afraid before Emmas surgery that I kept her home for a month and didn't let anyone visiting the house touch her. Last thing I wanted was for them to have an excuse to delay surgery.

    How's Carter doing? Is he in school? Is this the kindergarten year?

  7. Ok mister! Enough of this "chopping my kids skull" stuff! yeah the Spasms for madie ONE DAY just changed..poof were gone..we were on to bigger and yummer seizures! GAH!!Patience is the LAST word in my vocab for my madie but it took a little over a MONTH to see anything from her Depakote...
    I cannot IMAGINE the fears of surgery..I cannot give any words of wisdom...we just love our kids and try to make the right choices..its that freakin Second guessing in your wise words..;)
    One day you will ask yourself "have we seen a seizure today??" and then you will answer your own question with a "nope."

    Lil guy is in my thoughts and (about as religious as I can muster up..)Prayers as well.

  8. This must be along the same lines of whenever there is a neurologist around, the seizures that have been relentless seem to cease. That has happened with KC several times and it's always like WTF?? He's been seizing all day...
    Anyway, I hope that by some miracle the rest of your wait flies by. Can't wait until you are on the flip side of this, watching Bennett come back to life.


  9. I bet the wait is agonizing. I wish I had the perfect piece of advice or comforting phrase that would carry you through the wait and the surgery. Just remember how many of us are here for any type of support we can offer. We are hoping, praying, crossing our fingers, toes, you name it! Anything that may give you a boost or sense of comfort.

    Don't second guess yourself. Remember how much difference Elaine said it made when she finally felt at peace with the decision? You need that. And, whether it's FCD or a tumor, it's probably best regardless that it's taken out. Even if his seizures are improved. If it's gone, there's less chance of seizures recurring.


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