Wednesday, August 29, 2012
Yes, I am just on the border on complete insanity enough to follow up a post like the last one with one that is pure fluff. Pure fluffy CAKE, BABY!
But not just any cake, I'm talking about silky and smooth delicious creaminess oozing with all the evil that is the Dark Side of the Force! Awesome isn't it? You can read all about it here.
And since my birthday is less than a month away, I suggest you all start pooling your resources, because I have decided that this is what I truly want for my 45th birthday as I celebrate my descent into total madness.
As long as it doesn't have any eggs or dairy. That will, of course, be a challenge.
I may be crazy, but I still want to protect my heart.
Monday, August 27, 2012
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 know...it 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.
Saturday, August 18, 2012
Well, at least when it isn't in accompanied by an additional 'No'. As in 'No-No.'
Or when I say it to anyone under the age of 12. That's fairly easy.
Or when I tell myself 'No' whenever the internal dialogue comes up as to all the things that I need to start doing to better myself and get Life moving in the RIGHT direction for a change.
Or those times when I say 'No' to help from the many people who offer, even though the truth is that deep down inside I know how much I really, really need it.
Hey, can I revise my title to this blog?
The fact is it isn't hard for me to say 'No' at all. I wrote that title because when a good friend of mine wrote me a note and asked me to write a blog today because seeing a picture of Eddie every day for the past week or so as the main photo made her sad...I couldn't say 'No' to that.
THAT I get. Completely. This individual worked with Eddie as much as I did. And Eddie had a way of impacting the lives of every single person he came in contact with. I'm sure even the person who delivered Eddie's mail was devastated by his untimely death.
So I moved Eddie back up to my Header, a place he used to spend a LOT of time.
Christ...I can't tell you how much I really do think about the guy. I barreled through thinking about the anniversary of the day he died because we were getting ready for the camping trip and frankly I was jammed up over writing about him. I am still jammed up about it.
But, the fact is, I am jammed up about a LOT of stuff.
I've hit many snags of late. Some I can write about, and the thing that sucks more is there are things going on I CANNOT write about. And I gotta be honest...I HATE THAT SHIT. It really gets my balls in a bunch, because it trips me up overall. A lot of the time when I get more silent it is because I have aspects of my life that are suddenly unable to be discussed and it just...I dunno...makes it difficult for me to slog through it. Or blog through it, I suppose.
So I need to figure out how to DO that. Not that I have necessarily been Jack Handy of late anyway...but knowing that there are some places that I cannot go, even if I wanted to, just does something to my grey matter. I can't explain that, it is just how I am made.
Anyway. Gonna try to get back to it. That's all I can do. Try. Fuck Yoda and the whole 'Try Not' thing. I never got that statement...even from the cool Empire Strikes Back Yoda, whom we all love and adore. I get the main point of it...'Do or do not, there is no try.' But you also have to account for the possibility of failure and what you might learn from it. That's something he might have thought about teaching Luke in the swamp instead of just blowing him off after he couldn't get his X-Wing out of the mud.
I mean c'mon...that ship may have been a small, one-man fighter, but it was HUGE! And it had snakes in it! Yoda...maybe you could have said 'Again you must try, if at first succeed you do not!'. Ever think about THAT shit? That's what I'M talkin' 'bout, bitch!
Sunday, August 12, 2012
Monday, August 6, 2012
And no...I don't mean that T.O. signed a one-year deal with the Seattle Seahawks. I kinda like that.
I mean that the power was on all day, until around 5-ish. Then it flickered. Then ten minutes later it went out again.
Now I am back at Jen's parents house. Again.
Thank God for their hospitality, huh?
But this SUCKS as far as our shitty power company...AEP of central Ohio. I am so sick of this crap. Losing power blows on so many levels. But it blows on levels that go beyond levels we used to deal with now that we have The Bennett Situation.
Still, it is great to be able to be here. Can't ignore that blessing, and so we don't. One of these days, somehow we'll have to figure out how to repay it.
Gotta get my anger under control though. It's a bit high right now. The week is off to a bad start. The month is too. No sir...I don't like it.
Sunday, August 5, 2012
We live, at least for the time being, on the worst power grid I can ever recall living on. Lost power earlier this afternoon and am now writing this on my laptop from my Mother-In-Law's living room.
Not that I would have maintained any streak because of yesterday, but I didn't plan to because not this week but the week after I will be out of town on a short camping trip and not worrying about posting to this space.
I'm sure everything will come back on in a few hours, but it was getting steamy in the house and Bennett doesn't understand why shit doesn't work and we can't explain it to him and it just starts to get out of hand so if we have someplace to go why not go, know what I mean?
Anyway, if you (this means you, UHOH) see me on X-Box Live all night long ignoring your repeated requests for games and chats, it's cause I ain't there, my TV and X-Box just came back on and automatically signed me in. ;)
Though it will Auto Shut-Off in six hours. So that's cool. Just remembered that.
Friday, August 3, 2012
Bennett has a new Home Health Aide for hopefully a nice long while...and this time we continue the tradition of family members being involved.
In this case, now in addition to Jen's Mom, who watches Bennett on Tuesday evening's, Jen's cousin Angie (not seen here as she is taking the video) will be helping with Bennett some of the time.
He LOVES it. You can see how much fun he is having while she is around and even, on occasion, when the opportunity arises to have her own kids interacting with Bennett.
Can't beat that at ALL. She'll be doing this a couple of times a week minimum for Bennett, likely more, and we could not be happier. But the key is, neither could HE.
Thursday, August 2, 2012
SO. Time to start getting back into the thick of it. One way to do it is by killing two birds with one stone. In my absence, I have received a lot of questions privately. I imagine those questions are shared by some. Seems to me it might be easiest to just get some of this kick-started by answering those questions here, since they might have some universal aspects to them. I'll trickle them out, but let's start with one, shall we?
The most common question I got was...How am I feeling?
That question, to me, is not answerable. Only because I can't do it without really complicating it. And I never know what it actually means. Physically? Mentally? Spiritually? About the seemingly impending doom of the coming future? (That should answer SOME of the question right there, no?)
Bottom line is this. I always give the Hair Answer whenever someone asks me this usually. And that answer is 'Fine'. Because to be more specific, I gotta have a more specific question.
But...I got this variant a few days ago after I bitched about the whole 'I'm fine' thing to a friend, and it made me smile.
What new information do you have from your Neurologist appt last week that gives some hints to the cause (and hopefully) the solution to your pain?
The answer is? You guessed it. NADA. He did some tickling and poking and could not really determine what is going on. He did schedule an EMG for later in the month, but he said that he did not think it would yield anything.
OK, um...then why are we scheduling it?
I'm frustrated. A lot. Especially when I told this particular doctor about one of the exams I had by a PT about my butt muscles being in spasm and my right pelvic bone being pulled and angled outward because of it. By the way...my RIGHT side is almost always the source of most of this pain, mind you. Keep that in mind here. And my right pelvis/groin/back/hip specifically.
The doctor did not outright roll his eyes, but he glazed over like a doughnut. I knew right away he did not take that assessment by the PT seriously WHATSOEVER. I asked Jen about that when I got home, and she said that a lot of quote 'real' doctors do not take into considerations things that a PT or a Chiropractor might say.
I left with a sense of real defeat, and yet another prescription. I took the pills for about 5 days and stopped a couple of days ago. Wasn't helping to do anything for me except spend a lot more time seated...on the toilet. Who wants THAT?
I'll still do the EMG, and yeah...it will likely yield nothing. But why not? At least it might rule out a true Neuropathy.
And in the meantime, there is a place called Sunbury Chiropractor that I will be making an appointment with shortly. Come to find out our insurance actually DOES cover it. They do not, however, cover acupuncture. I checked. Especially after another old friend wrote me a note (which I need to respond to) about her experiences with pain over the last few years.
Yeah...I'm ready to take the full plunge into anything alternative at this point. BRING ON THE LEECHES!
Wednesday, August 1, 2012
Time to resurface I think.
Yeah...I suppose that no matter how much I try to convince myself to give this up, and that in the end it doesn't REALLY matter, I suppose it actually does, somehow.
It certainly has to matter more than the endless hours spent playing HALO, or the enormous amount of time during such an endeavor that I might spend trying to find something as insignificant as a skull or a terminal.
Many of you won't know what the Hell I am talking about. Or why it is even significant. And you won't understand when I say how much I detest The Flood. Can't stand levels that feature those freaky things in 'em.
Doesn't matter. Let's just say that I recognize that as a hobby, gaming is a time-sucker to the Nth Degree.
Granted, ever since my very old friend Richard got himself an X-Box 360 for his birthday, I have to admit that I really, really like being able to 'play' with him. There is something so overwhelmingly satisfying about it.
See, I don't really have any flesh and blood friends anymore. I could write a whole blog about all the reasons why. Hey, maybe I will someday. Maybe I will someday in August. Gonna try and shoot for another streak in August. Have lots of topics stacked and am anxious to get some things off my chest.
Besides, I need to focus a lot of things that are floating around in my brain, and since August is a very strange month for me traditionally, I can't think of a better time to do just that.