Monday, August 27, 2012

Places Both Dangerous and Dire

I find that, very often, maybe too much so, I wind up telling Bennett's 'story' to perfect strangers.

I'm not sure why I do it, maybe because it is just natural for me to talk about anything and everything. Maybe because I don't get out a lot, so when I do physically talk to people I can be a bit of a motormouth. Maybe because in a lot of ways Bennett's story is so integral to everything that is going on in my life so it naturally comes up in conversation.

I do wonder how much is 'too much' though. Do people really need to hear this thing?

And in so much detail?

You ask some people, they'd say that I don't need to be so open. Even here. 'TOO MUCH INFORMATION.' I hear that a lot. From a lot of people. Or in this Facebook, shorthand age, TMI.

Others would say 'Let it fly! Why not talk about the things you want to?'

The reality of where I should land is probably somewhere in the middle, but I have never felt comfortable in the middle. I tend to go too far one way or the other. Or at least that is how I see myself. I could be wrong about that. I'm feeling very wishy-washy today, can you tell? That statement might not be coming out of me another time, another place.

But take the case of yesterday for example, in the midst of what some could call a Weekend from Hell, Jen took the boys to a local pool to try to distract Bennett who was really climbing the walls here at the house. Bennett was making a bit of a spectacle of himself, just 'being Bennett' really, not acting badly since he had something to do, but he was being loud and to put it in a way that I hope some of you understand he was acting severely disabled.

Jen told me that Carter moved away from her and Bennett to sit somewhere else. He didn't make a big deal about it, but when she asked him about it later he had to admit to her that he was embarrassed. Carter is only 8 years old, and I can't blame him. But this? It breaks my FUCKING HEART.

This was not the life I signed on for. This is not the life I want for my wife. For Carter. And especially for Bennett.

In case you did not know, my mood of late has been deteriorating. As usual my state of mind seems to be symbiotically linked to Bennett's behavior, not necessarily his overall progress. While his cognitive progress is still very slow, on this 3rd anniversary of his Temporal Lobectomy, I have seriously learned to live with and accept that. I really have.

It is the out of control behaviors that I can't handle. The raging and the biting and the hitting and the total disregard to listening to anything we try to say if he chooses not to. Again. These behaviors are often unmanageable. Again. We seemed to be coming out of this tunnel, and yet now we find ourselves headed right back in.

The issue is that you can't use 'currency' with Bennett. Not really. That requires a level of communication sophistication AND a certain level of patience and emotional control on his part that he just does not have. We are still trying to get some intervention of some kind for all this. But the wheels of progress they turn so slowly in this area. If it is not an emergency situation then nothing happens. Now if it were ME beating Carter, something would happen. But his brother? Well...that we can ALL just take our sweet MUFUGGIN TIME WITH!!!

There are times, many times in fact, I imagine that this road doesn't have a beginning, middle and ending at all. Because most of the time it feels like a race track, simply looped together end to end, and along the way GOD FUCKS WITH ME by putting different scenery on the side of the road to make my think I have taken a NEW PATH, with NEW RESULTS, and I start to HOPE again, to BELIEVE again.

But then I see some familiar things, previously forgotten. Or perhaps I am just living in denial? Maybe. Maybe I put those new pieces of scenery there, to fool myself into a false sense of security. Who knows? Who CAN know? I guess no one.

There are no answers. At least none today.

A very good friend of mine, an officer in the Army whom I have much admiration for, once told me a great anecdote in regards to Perspective. I try very hard to keep in it mind. Though I have to be honest with you...weekends like this weekend make it very, very hard to do it. But I try. Yes, I try.

I'll butcher it I'm sure, but he was returning from a deployment or something and he was standing with a couple of his guys and there was a civilian woman also standing alongside him and his group and it was taking a particularly long time for the luggage to come out of the luggage belcher. The woman, exasperated and impatient, was growing weary of the wait.

She turns to my friend and said 'Ugh! This is taking so LONG! Does it get any worse than this?'

My friend, who is a commander of men, who has been under fire and kept his cool, who is actually on his way home as I write this for a brief period to spend with his Mrs. before returning to The Stan to continue with his current deployment, is a warm, thoughtful guy, but doesn't pass up an opportunity to pass along some wisdom that he has picked up from experience. But never in an assholey way.

It's a Missouri thing. Us Missouri folk are like that.

He looked at her and smiled and said 'Ma'am...don't worry, the luggage will get here. And you could be worse...we could be standing here waiting for a helicopter to pick us up taking a hail of enemy gunfire from all sides. That would be a LOT worse! It's all about perspective. So let's pass the time, tell us about yourself. What do you do for a living?'

That last bit about asking her to talk about her is a great technique isn't it? After a comment like that it doesn't allow a person to sit and ponder whether you just insulted the living shit out of them or not, it makes them instantly have to stand there and start thinking about themselves. I love it.

But aside from the psychology (and the fact that I am probably telling the story all wrong) I do understand the perspective of things, and try very much to remember the good. It is just hard. Things are just as bad as they have ever been. And if you add on top of it the issues with me, our financial issues, and on and on...we are in what is likely to be one of our most difficult places ever as a family. And the consequences could be dire if we don't tread very, very carefully.

I've now known Jen 13 years. In December we will have been married for ten years. We argue more than we ever have, but there are great moments. Carter is 8, struggling big time with so many things, and yet maintains a fantastic sense of humor. Bennett is nearing the age of 5 and kids under 2 smoke him in every conceivable cognitive category, his aggressive and self-control behavior is off-the charts, but he hasn't had a seizure in 3 years and he has more access to therapies than I can shake a stick at. And he can be the sweetest boy in the world when he wants to be.

Never before have we been tested like this. I think the next 6, 8, maybe 12 months will be pivotal for a lot of things. We weather this? All of us might be OK.

Hope so.



  1. Sorry.

    Not really, just yanking your chain.

    Though I am truly thankful for the resurgence of our communication, I feel like it has been uni-dimentional....almost all video games, and rare substance.

    Maybe that is what true friendships are...lots and lots of day to day that you know each other well enough to help in whatever way you can when the big moments come.

    At least that is what I feel like we have. It's what I have with my wife, and what I guess you have with Jen.

    You will make it, even if you have to boost.

  2. Your post's have become more lucid, reaching the point you want to make with certainty. Doubt will always be there, just like any other feeling.
    Each time there is a crisis but somehow we make it through. I hold my son in my arms and his breathing becomes lighter, less visible. He is unconscious and I work furiously to get his lungs working, all the time feeling, why put off the inevitable?
    The answer? Because we can? We don't know what we are capable of just as we don't know that after getting up off our knees a great big stick is coming to knock us back down again. So we might as well stay down, right? Right? Some get up and some don't but we can't waste our time judging ourselves.
    I'm glad to see you are more clear, even if you don't feel it.
    I left this on a blog of a mother who feels like for the moment it's all a bit too much, it offers me a degree of comfort:

    cut the dry wood
    expect less of yourself
    dry up your thoughts (not your tears)
    memento te amari


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