Monday, August 24, 2009

Do You Believe in Jinxes?

I might. Not sure. But after typing on Sunday that Bennett's seizures had actually lessened in severity and frequency and laughing at the irony of it, I find myself as far away from laughing as a man can be. I Jinxed our good fortune.

Since that time, I have witnessed three of the most horrific sets of seizures he has ever had. EVER. Just saw another one. If it had gone on one more minute I was going to go for the Diastat, something I have yet to do.

These aren't just 'salaam' type jack-knife types, there is something more to them, hard to describe. A violent, sustained convulsion, bending backwards not forwards, strange grunts. Then another, but this one more like the ones I've seen before. Then two quick bursts, then leaning WAY back, arms stiffening, moaning. Then pause, then more of the same. Pause. Something different.

I want to he hopeful. I really do. About this week and about this surgery. But I'm not right now. I'm too weak, too wiped out mentally to hope. I can't shake this awful feeling of...what's the word I am looking for...dread. I have got to figure out a way to switch it off. Or I'm toast mentally.

Anyway...Jen and Carter went out for some Mom/Kid time since we won't be seeing him for a week (at least) after tomorrow. Bennett is post-ictal on his mini-sofa, totally out, and I sit here clacking at the keyboard.

That's the latest...maybe I'm hoping I'll reverse the Jinx. Now that I have talked about how bad these seizures have been, maybe they'll weaken to make me eat my words.


  1. Just what you DID NOT need. I'm sorry, hon.

    I hate when people try to put positive spins on crap. But I'm going to anyway...simply because I've been feeding myself the same stuff!

    Maybe your heart NEEDS to see this stuff. To be TOTALLY there. In that I know we're making the right call place.

    I've been telling myself that as Trevy's seizures are back on the upswing again. It helps. A little.

    In the meantime...tell your little man that you love him more than life. And hug him so he believes it!



  2. I so agree with Danielle...It is good to have this happen to reinforce the decisions y'all have already made...Now there will be NO doubt at all....Surgery is THE option....(And yes, I DO believe in jinxes, as you have seen from my posts)....

    It won't be long now...Relief is just ahead for Bennett and all of you....

    Just hang in there a little bit longer...


  3. Ouch. Now, I can TOTALLY relate to the "I forgot to call..." Delma got all the OC in this family. Sorry you have to see your baby experience that. No, I don't believe in Jinxes, but I do believe in evil. That's what you are facing down. I hate that you feel you are facing it alone.

  4. Hi Ken...I have checked on your Bennett before, but did not realize he was having surgery until I checked in today!!! We will be thinking and praying for your son through this surgery. My son, Jackson, had surgery 10 1/2 months ago. I remember riding in the car to Detroit, just watching him have seizure after seizure. I remember hugging him and telling him to hold on...believing he would not have to experience IS much longer. I finally felt peace. I was still scared, but surgery was the best thing for Jackson. He was not the most "ideal" candidate, but he has done great since surgery.

    I know you all are so emotional right now. I pray everything goes smoothly and just know that a lot of people are sending good thoughts your way!

  5. You know what's crazy...after having seizures for 3 years...the few weeks before surgery...Sophie had her worst seizures ever!!!

  6. I totally believe in jinxes. I believe I can ward off seizures by having my iPhone in my hand at the ready, eyes peeled waiting to record the next seizure. If my seizure log is not within my reach, one WILL happen. But I am not normal at all.....

    Like I said earlier......this just heightens the resolve. And you have that resolve. It will be there when you need it. You have known this was the way to help Bennett for a long time. You get to try to fix him for good. And it IS scary. But it is awesome.

  7. Ken, I'm so sorry. But, as horrific as I'm sure it was to witness such an elaborate set of seizures, I'm hoping it helped to solidify your decision. Give you peace in that there's no more doubt that he needs more intervention.

    I have a lot of hesitation when it comes to spreading good seizure news. Because that's usually when it stops. I tell my mom all the time that if I talk about it, I'll jinx it. So, I know what you mean. Or like Liz said, when I'm armed with my video camera to catch something new and unusual...he stops.

    We'll be thinking of you...and hopefully you'll get to Cleveland with a newfound peace.

  8. My friend. Thinking of you all as you embark on the path we embarked upon April 30th. I wish for the magic wand outcome. Clean and simple. You are I'm my thoughts and I think of Bennett explaining the rules of baseball to you in the coming years.

  9. The seizures are afraid because they know their days are numbered!

    It's their last hurrah! Hopefully.


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