Saturday, May 19, 2012


Most people tend to think that when I go underground, when I disappear for lengths at a time, that things aren't going well.

They are correct.

What's interesting is that if you look at the number of posts overall, over the course of the couple of years I have been doing this, whenever I drop to single digits per month it is always tied to Bennett's issues. Always. And yet, when things were VERY bad, I mean at their WORST with him, my post count was at its ZENITH. I can't quite explain that.

Not sure what it means.

I think it has something to do with accumulation. The weight of too many things over too long of a span of time.

A rolling stone gathers no moss, and at that time there were a few other things that I had that kept me feeling more upbeat. More hopeful. Remember, at least at that time, I looked at Bennett the way I would my car. I thought the surgery would be like taking my car to the shop. Pop that tumor out and then everything was going to be fine.

Doesn't really work that way.

When the Disability Grenade goes off in your life, there are a lot of things that happen. A lot of things. I could write a book about what those things are. I probably should. Could use the money. But who is gonna publish a book that is so goddamn depressing?

One of the things I never realized about that Grenade is the way the shrapnel actually works. You don't realize that when you work like a crazy person to plug up a mangled gash that is gushing blood that not only are there a lot of other mangled gashes that blood is spurting out of that you have to try and seal up but what nobody tells you and what you don't realize until later is all the little leaks you have going.

Leaks that you just can't fix because you are too busy with the bigger issues, but these leaks are causing damage too, and sooner or later they are going to become much larger problems.

It doesn't ever seem to have an end.

And the worst part of it is that even if you think you have it worked out enough to where you might be patched up enough to move along at what might be considered a 'normal' pace again, the raw truth of it is that you now live in a Disability Mine Field, and the explosives are everywhere, and you never know, now, when and where you might accidentally trigger another explosion.

So yeah, Bennett's behavior has been awful again. Really bad. Seems to have been this way for a LONG time this time around.

It's been awful watching my older son Carter often have the same look on his face that I did as a kid when his younger brother lays into him. To watch Carter's lip shake when he tries to talk about why he doesn't want Bennett to live with us anymore is...well, it breaks my heart in ways I can't begin to describe to anybody. For both of those boys.

Today, for the first time, we are trying a new medication. It is called Strattera. Thank God Bennett has Medicaid due to his multiple disabilities, otherwise no way could we afford the $400.00 CO-PAY PER MONTH. (And yet...the highly addictive pain medication I am currently taking as I wait, patiently now into the fourth month, for someone in the medical community to figure out WTF is going on in my back/pelvis? $4.00.)

Bennett's first dose was today.

He was a lot less agitated so far. A lot sleepier too. It reminded me of the Bennett that woke up from surgery. He was like a Zombie Bennett. He was less aggressive. He was also less engaging. Less inquisitive. Less affectionate. A bit 'out there'. Everything has a price. EVERYTHING.

Carter was a lot happier about it, but Bennett still has aggression towards him. Because the aggression in many ways is like a game to Bennett.

And, even with the medication, Carter still has a lot of anger and resentment towards Bennett for all the things that Bennett represents, all the things that, in Carter's very young mind, Bennett's presence in our lives has robbed from us.

It breaks my heart in ways I can't begin to describe to anybody. For both of those boys.

Recently Elizabeth had asked to have a bunch of people to participate in something, to do a little City-On-The-Edge-Of-Forever-Kinda-Thing, where we would post a message to ourselves to send back in time to BEFORE the accident. What would we say to ourselves? She is putting something together, some kind of video. I've given it so much thought. Probably too much. (Huh? ME!?!? overTHINK???) And in the end, I am deciding not to do it.

I know it is Elizabeth's intention to be inspiring to parents new to this, and I do get that, but for me I keep getting tripped up in the Sci-Fi of it. The Time Travel aspect of it. And I am fixated on the thought that the bottom line is that I can't CHANGE anything, so why try to send any message back to myself? And yeah I know, that isn't the point of her thing, I get it. But it keeps ringing in my head.

This is our life now. These are our circumstances. I can't go back, can't pull a Desmond Hume or a Doctor Who, and things are the Way That They Are. I need to just make the best of it and figure out a way to keep moving forward.

Someway. Somehow.

It is just so...hard...sometimes.

Or, maybe the truth is that I am, plain and simply, a coward. Maybe I'm scared that, deep down inside, I have the sinking feeling that if I really HAD the opportunity I would not have the strength to avoid writing a single word, and it terrifies me more than anything else I have ever known before, and I have known some dark shit.



  1. My guy also has severe behavior issues. Last fall was the worst we have had./ Sam tried strattera and it heloed a bit. Now he takes Risperdal and Tenex. It suck because ou are right- everything has a price. Without the meds though he was ripping out his sisters' hair and throwing things at my head on a regular basis. I am sorry things are rough right now.

  2. Someone actually did write, "Run, Run, as fast as you can." And I still hope to get something from you, Ken. I don't look on it as being a looking backward -- I look on it as more of a collective performance art kind of thing -- moving, funny, preposterous, ugly, beautiful, despairing, hopeful, etc.

    I am glad to see that you've posted again, although it's difficult to hear about Bennett's struggles and Carter's anguish. I'm so sorry for all of it and just have to believe that things will get better, that you will do more than endure.

  3. Write the book already now , would you?

    Send in the picture na write, whatever your heart tells you too.

    Collateral damage . Thats what I call it and it is a btch.

    Hoping good things for Bennett and the new medication. I feel so badly for these little guys. I see it in Joes eyes daily.

    And keep writing. Please.

  4. No words really. Just want you to know I care.

  5. maybe ur thing to say would be "keep moving forward"?


You Are a Beautiful Blank Page...Do You Have a Great Pencil?

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a t...