Saturday, August 16, 2014

Clear with an Ever Present Danger

Just to get the news out there, disseminate it fast, yes Bennett's MRI was clean. No tumor regrowth.

And that creepy image up there isn't him. Weird though ain't it?

Getting the news that his MRI is clean? That's the part where I am supposed to celebrate. To high-five and say all the right things about how grateful I am. About how glorious God is for giving us more time with Bennett and celebrate His Wisdom and His Generosity. Here is the part where I am supposed to be jubilant. Reverant. Joyful.

This is the part where I fail everybody.  Where I disappoint. Everybody. God. My mother. My spouse. My friends. My kids. My neighbor down the street with the hideously ugly over-saturated lawn ornamentation. And myself.

I can't do those things. I can't BE those things.

Wanna be. I think. Sometimes. Maybe. Dunno.

I asked Jen a question during the drive home, kind of like Butch in Pulp Fiction. Strangely she answered much the same way Marsellus Wallus did. Though she had NOT just been violated in the bad place (the back of a station wagon?) and I had NOT just gutted some redneck with a samurai sword.

'So what now?'

'What now?' (DAMN I wish she'd said 'Let me tell you what now.')

'Who do we go to now for answers?'

'What answers?'

'About what is going on with him? His regression, the peeing in his pants again, the violent behaviors, his stammering, the fucked us shit on the right side of his brain that no one seems to be able to tell us shit about over the last five years? The fact that since his surgery he really doesn't seem to have come all that far, at least not the way we expected him to.'

'What way did you expect him to?'

Damn...she got me. Sometimes, despite the way we often get off track with each other, there is a mutual understanding of Bennett that we have that does attempt to help the other stay on course. Didn't matter in this situation though. I was way off the rails, and she knew it. I just kept going, flailing blindly by now, swinging at shadows, feeling like an idiot the whole time.

I didn't care anymore. I just needed to vomit words that had no meaning.

'I don't fuckin' know! Who do I go to for an answer on how to live this life? How to help take care of him? How to manage all this shit? Who do I go to that's going to teach me how to make all this shit...OK!?!'

I didn't have to say it, she knew what I meant. I knew it too. There was never going to be an OK for Bennett. At least not as far as I was concerned.


I remembered something his surgeon said to us the day before he was going to cut open Bennett's skull and go after that tumor like a fat guy going after the last piece of pizza at a bachelor party. He said that surgery was a very direct thing, there wasn't anything vague about it. But there was a lot of fog and uncertainty after the fact when it comes to most surgeries, brain surgery in particular.

Oh. Perfect.

There was no way to know how the brain surgery would affect Bennett. What outcome he would have. How he would be afterwards. Just no way. But it was, in his opinion, Bennett's best option.

His BEST option.

I used the perfect line already, right?

And we had to go into it having specific goals in mind. We had to go into it with the idea that we just wanted to get rid of the tumor completely so that it had as little possible chance of ever coming back, and to kill the seizures...forever.

Nothing else could matter at that point in time. And frankly, I remember that point in time. I can go back and READ about that point of time. I was more tired then than I am now, and I am really exhausted now.

But the truths is...why SHOULD anything else have mattered?. I could not see the future. I didn't want to. I wanted that tumor gone, I wanted those seizures gone, I would have done anything to get them gone.

I'd have sold my soul.

Sometimes, it feels like this is exactly what I have done. This hollowed-out feeling, this emptiness that I feel when it comes to the wreckage that the entire experience has wrought on all of us, you can't escape it. Not when Bennett continues to struggle as much as he does. And I absolutely at that time would never have made any different choices. It is safe to say that those...actions we took were not choices at all, they were just things that we did, if that makes any sense at all.

I have no regrets.

DOGDANCING brought up something in a comment yesterday that she considered so delicate that she deleted it. I consider her one of my good Imaginary Friends so I asked her about it and requested that she consider re-posting the comment because I wanted her to know I was not offended by it. She was kind enough to reconsider, and did.

In it she wondered if I had ever wrestled with the 'dark thoughts of of wanting the tumor to be back so there could be an end to this journey? We don't talk about that as parents, because we get slammed. But I know those thoughts are out there. I can't be the only one who's thoughts goes there. Then have to spend a few minutes fighting within, wondering why my brain would go there in the first place. To finally talk myself into the notion that its not a selfish thought, but one of compassion? Parenting with mental health issues...why are there no books out there?'

My first thought is WOW...that shows some real guts to come out on a limb like that and post that comment. I respect it a lot. Not many people would have that kind of courage. Says a lot about a person, to me. My second thought is...I don't consider the thought to be dark at all. I consider it to be one of the most normal to have in these most awful and terrible of circumstances.

You never want someone you love to suffer. Ever. And if you think that perhaps they might suffer less by not being here? Sure, you might go down that road every now and again. And I have. It is usually triggered by one of his more violent episodes. And it is usually followed by being able to find me somewhere in the house, curled up in the fetal position, crying until I get one of those snot headaches and can barely see out of my swollen eyes.

Mainly because the tumor coming back is such an awful way for him to go out. Such an agonizing thing...I have to catch myself when I ever think that. I mean, what kind of Dad can I be? I'd probably choose meteor or something if I had options. Hence, the kicking myself in the face as often as I tend to do. For that and so many other things. Despite my defense of the normalcy of the thought process overall, Still, I don't know...I still would like to believe that somehow, someway...I could learn my way out of this.

And I haven't yet. So I hate myself for it. From time to time. Do I think I can? Learn from the harsher bits, the darker self so to speak and learn from the good parts of who I am, toss them in a blender and somehow pour out a better man?

Yeah I do, or I wouldn't allow myself to sit here, writing it all out, taking this journey, chronicling it. I wouldn't keep hacking away at it if I didn't believe that somewhere along the way I am going to find more small chunks of gold to put in my pocket, and that eventually there will be some kind of pot (mmm...pot) at the end of some metaphorical rainbow that I can dump all that gold into.

Hey, as long as there ain't no creepy leprechauns? I can live with that.



  1. I am very glad and relieved that the MRI is clear. So you don't have to go down that path. You can focus on working on his behavior and the issues that make it difficult to deal with Bennet. (yeah, I know, like it's easy; note I did not use the word "just") You got one thing out of the way, for now, that would have been rockier course to have to take. For now, try to be a bit glad, relieved about that. I remember being so outraged once upon a time at having to be relieved over something that was bad news to most anyone, but for me it was better than the alternatives.

  2. When my daughter was about eighteen months old we were attending a parent/child playgroup for handicapped children. The parents had a chance to get together support each other once a week which I desperately needed. One of the children there was anencephalic, a large portion of her brain never developed. That little girl died during our time at that group and I remember thinking, they're so lucky and then feeling awful because I didn't really want my daughter dead, I just wanted her to not be handicapped.

    Even now all these years later, I still hope that she dies before me, which I suppose is very selfish but it's how I feel.

  3. Oddly enough, that comment wasn't the one that prompted the deletion. Somehow asking you that question seemed perfectly okay. Tossing in my two cents about C seemed to me to be over stepping my bounds.

  4. I'm glad to hear that the MRI was clear. And I get all of the rest of what you're thinking and pondering.I think maybe the main and most important thing I've learned during the last twenty years of parenting my daughter is that I'm perfectly capable of holding two opposing thoughts and feelings at once. I have no idea how I do that, and sometimes when I attend Buddhist talks, they talk about this, and I realize with gratitude that I didn't "learn" how to do it, but it was, somehow imposed upon me by virtue of dealing with all the shit and glory of Sophie. I'm not saying that it's a "skill," in other words, nor am I saying that I've achieved anything or am a Buddha, but I think the extreme stress coupled with a sense of absurdity and a natural proclivity to not be traditionally religious honed me. I'm not sure that makes sense, but I believe you are groping toward that understanding -- or already have that understanding yet are afraid of it or are fighting it. I could be wrong, and it may be no better than the horrid "God only gives you what you can handle" shit, but I think you're wrestling, like Jacob, with god or Angel.

    And to introduce a bit of levity to this discussion, I am really curious to know more about the neighbor with "the hideously ugly over-saturated lawn ornamentation." That was an AWESOME bit of writing!

  5. Thanks for the compliment. Maybe I can sneak a photo when the homeowner isn't trying to look into my house.

    I am not entirely sure what you are saying about the thoughts in opposition, but not understanding you is not a new thing for me, it usually takes me several readings, a Thesaurus, 3-4 trips to the local library and a consult with one or two of my former professors before I can get something going in my head. So I may get back to you on it in a couple of months.

    But I don't know if I am getting any closer to a reasonable understanding of this or not. Or what I am seeking. In some ways, I am scared of the way things are headed when it comes to Bennett. Petrified. Terrified. His abuse of each of us escalates and I can't see his future clearly, or mine. I really do not know how to 'fix' this, and I think there is no 'fix' now what?

    Nobody told me there'd be days like these...

    1. Wait...having two thoughts in opposition but somehow they co-exist peacefully? Is that what you mean? Shit AND Glory?

      Hey...I didn't need my PROFS!!!


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