Tuesday, July 6, 2010

Sounds of Insanity

Remember last Friday's post about music, where I was talking about a blog entry I was writing that was 'sort of 're-cap' of all the shit in my life that led up to me deciding to stop blogging for a while during a period where I was, at least I believe I was, dangerously close to the edge of a cliff I would not have been able to climb back up had I fallen over'?

Well, I think perhaps that cliff is still very much in plain sight, and I'd be lying my fucking ass off if I said I did not think quite a lot about the sweet solace of turning around, breaking into a run and leaping off of that cliff and letting the wind guide me straight into whatever lies at the bottom.

One day it is great. One day it sucks like nothing has sucked before.

One hour I am blissfully enjoying some distraction, almost forgetting the awful parts of not just our lives but the lives of those close to me. Another hour I am trying to fight back tears that seem to want to burst out of me with no apparent catalyst in that moment that I can detect whatsoever.

One moment I smile. One moment I am grabbing my head, wishing I could dig my fingers into my skull and pull the raging pain that is throbbing and pounding and eating away at my will to keep fighting from behind my eyes.

One second I try to be positive and I actually succeed. One second I find myself feeling like I want to beat the living shit out of something or saying something so horrible that it hurts someone I care about.

Today was not an easy day. My God...the screeching. The howling. Sounds I never thought I'd hear come out of a kid. Sounds that had been persisting for weeks but seemed to have abated for a while. Sounds that are now back full force.

All this week Bennett will be home from Autism School since they are on a break for the week. If the rest of the days are anything like today...well, you'll have a front row seat to that final moment when one of your fellow human beings at last loses what little grasp he has left of his mind.

It might be really fascinating to witness.

It might not.



  1. Brutal Ken...just brutal. Lash yourself to a tree and hang on my friend.

  2. Let's pick straws for who jumps first. At least one of us will have something softer to land on ...

  3. "Come to the edge, He said. They said, We are afraid. Come to the edge, He said. They came. He pushed them... and they flew."~Apollinaire,Guillaume

    So,you know me and quotes and this one just surfaced immediately.I think you know who I believe "He" to be and I think I know,some what,your feelings on "He" but,without getting too preachy,preachy, I have to say,hold on Ken,just hold on and He will not allow you to crash and burn.I promise.You are not alone.

    Your in my thoughts and prayers Ken.you really and truly are.

  4. Sorry things are so hard right now and that Bennett being home is making it harder. But it's Wednesday hump day, half way to the week being over. Just count it down and breathe. You'll get to Friday.

  5. Think of something really soothing and helpful that I could say to help you...and then pretend I'm saying that.

    Wish I was there to bug you in person.


    (Heather gave a great quote!)

  6. Claire:
    Very 'piratey'...like it.

    Good call.

    You always have a great quote. It's a damn shame God and I don't get along anymore. Really is.

    Yeah...halfway there. That's always good.

    We may end up spending more time together down the road if my marriage keeps disintegrating at the rate it is now. I may be looking for a place to stay once I get kicked out.

  7. I 100% believe what Heather said. Our circumstances are completely different now, but still equally painful. I have somehow managed, by the grace of God, to hang on all this time. It's the single most difficult thing I've ever had to do, because every part of me just wants to find the exit and run away. But, I'm still here trying. As are you.

    You guys are often on my mind and in my prayers.

  8. As always, wish I could help more. I'm certainly here to listen if you need. Feel free to call.......though you may then get to hear Maddie vocalizing (or moaning) in the background.

    Maybe find some music y'all can agree on and turn it up so can't hear the screeching.

    I've mentioned it before to describe how I stay sane but really you might want to add in some form of exercise. For me, running is the answer. Endorphins (and beer) keep me smiling.

  9. Sorry you are drowning in the pits of life.

    I only have prayers (which I know you don't rely on) and cyber-support to offer, but hang on, and don't "give up" during this season in your life.
    Many of us have felt much of the pain you feel...all the pain that comes along with having a special kid...so know you are not alone.

    take care, hope today is going better...

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  11. Dude that sucks.

    Nothing is going to make what you are going through seem okay. 'Cause it ain't. People weren't designed for this kind of suffering.

    Without God, the best you can do is hold on and rely on friends to help you through.

    I'm proud of you and the fight you have inside. Never give in, don't let the bastards win. Fight for your child, fight for your marriage, and fight for your sanity.

    I'll be praying for you,

  12. Breaks are hard for everybody. Hopefully, with the structure of school next week, everyone will feel a bit better. I am DREADING the four week break Sophie will have in a couple of weeks.

    As for the rest, there is nothing I can say to make it better. Raising a child with special needs is hard. I am still waiting for the day that I come to terms with it. I am not sure how others have.

  13. Over the last seven days, Colby actually had Sunday and Tuesday with no VISIBLE seizures...I didn't speak about it until after he was in bed on Tuesday night...I was afraid I'd jinx him again....I did...April was the last month we had two seizure-free days in the month....

    No matter what I do, I can't make myself NOT get my hopes up and start letting my breath out for the day when I see no seizures...No matter how many times I get disappointed....really DEVESTATED....Usually by the next day when they show themselves again....

    It's mostly up and down with most of us parents, I think....We are all on that rollercoaster with you...I think some folks just put on a better show than others...

    Hang in there...


  14. This is the last week of Summer school. The next month will be interesting around here. When was Bennetts last EEG. I always associate moaning and screaming with epileptiform activity.
    Don't go off the cliff. Change something. Go out and get some exercise even if you don't want to. If you have an iPod download couch to 5k. Its a very simple starter program that anyone can do.


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