Wednesday, May 28, 2014

Wake-Up Call

I sleep alone.

Have for a few years now. After Bennett had his issues with seizures, Mrs. Lilly and I were never comfortable with the boy sleeping in his own room. What if he started having seizures in the middle of the night? And he did, back in the day,, night too (during 2009 when he was being ravaged by them), and we wanted to be there for every cluster.

He was teeny then, and still in diapers. So he fit very easily twixt us both on a monstrous King Size mattress. Times change, and while his seizures stopped after brain surgery, fears of what he might do because of his disabilities remained were he to awaken in the middle of the night and go wandering about. So he remained in the bed.

He changed with the times, and has grown like a genetically engineered tomato plant. I was getting almost no sleep from his rolling around and finding immense comfort by using me as sort of Man-Pillow. At some point, it was going to have to be him or me.

Guess who got the short straw?

Made sense. He usually seeks Mommy in times of extreme duress anyway, and so that's the habit that started forming. The guest room bed was fairly comfortable, and a boy's best friend is his Mother. It has been this way for years now. We tried a few times in a half-assed way to break the chain, with little success (did I mention the half-assed part?) and then we tried one total commitment effort and had some good success. This was when we moved from the house we used to own and came here, to the house we are now renting. That was last summer.

It did not last long. Jen's job changed, she started working REALLY late at night three nights a week, and Bennett's medications changed...a lot. So much that they affected his sleeping cycle. Since sleep become a precious commodity that we both desperately needed to get, AND since he kept waking up and coming in to the bedroom to seek comfort from Mommy, AND since we were both becoming Walking Dead from sleeping maybe 4 or 5 hours a night, we caved and went back to the way it used to be.

So I sleep alone.

Is it healthy for our marriage? Not really. Is it healthy for our family unit? Probably so. It's a bit of give and take there. You lose ground in one area, you gain in another.

I can't say I know for sure if this is going to change again anytime soon. I know nothing with certainty anymore...other than some of Life's Absolutes. I'll die. Taxes are due on the 15th, that kind of thing. But the rest? No way to plan, because Bennett is the Ultimate Plan Fucker-Upper.

Allow me that.

Bennett's DISABILITIES are the Ultimate Plan Fucker-Upper. Pay very close attention to the fact that I am making note of this re-statement. I'm his Dad, and even I say shit that I find offensive at times. So the next time we as Special Needs parents are so quick to gather a lynch mob together to go after someone for saying the word 'retarded', sometimes even when they may just lack the right guidance and education....pause for a moment and consider the things we have thought and felt as PARENTS of our own children. Of COURSE it's a shit word that we hate. But judgment is not a thing to be passed around like bad Chinese Food samples at a Mall Food Court. (Or chocolate covered pretzels from a supposed 'buddy'.)

But I digress. So sorry, I tend to do that.

I had a point here somewhere. Oh last night, I was not going to sleep alone.

The plan was for me to sleep with Bennett. Jen had to get up super early for a doctor's appointment and I went in to sleep in the bed with Bennett so that he would not be disturbed by her waking up and doing her morning thing. That was the PLAN...Bennett went a little, how should I put this...bat-shit-off-the-charts-out-of-control when we tried settling him down for bed. This was after midnight mind you. This is how fucked up his schedule is on the new medications he is taking to manage his bat-shit-off-the-charts-out-of-control behaviors, his sleep, and other junk.

So we had to fall back to Plan-B. She slept with him and I slept alone in my usual spot. She got up earlier than planned, did her thing in a different room, then came in and woke me up, I went in and laid with Bennett until it was time to start to wake him up and get him ready for school.

No chance at all of me going back to sleep when I went in there to lay down. I am that type that once I am up, I am up. Might as well start the coffee, because it will be a long day.

All of that set-up, which you needed to know, brings me to the reason I wanted to post so quickly after yesterday's. Just to explain one moment in time. ONE MOMENT.

Remember when I said I had such a hard time with stress? With breaking out of this cycle of Post Traumatic bullshit that I am dealing with when it comes to Bennett's aggressive behaviors? This is related to that. The distinction I want to make is that for the most part his intellectual, cognitive, communication, whatever you want to call them disabilities I can cope with. It is the explosive, random and unpredictable aggression that I have a very hard time handling.

Without question, it is the single greatest challenge I have faced in my life. Ever. And I think I've had my fair share of uphill climbs.

I was watching him sleep. Cute kid. Always has been. It was one of those moments that you cherish where you, as a parent, wish you could bottle the emotion you feel at that split-second so you could put it away somewhere in a cupboard in order to drink it up at some other time when you feel like absolute shit.

When it was time to rouse him from sleep, I gently put my hand on him, said his name and nudged him.

He punched me directly in the face. Since his punches are almost open handed, he got some Wolverine action in too, so two fingernails scraped across my cheek.

Was he even aware of it? I don't know. It doesn't matter does it? Moment gone. Replaced by a lot of other things I've gone into before so I won't go into again. But if you know what PTSD is, how it does the whoodoo-voodoo on your body's systems, you know what I am talking about. If you do not, then Google is a great tool.

Bottom line? Day started off like someone dropped a turd in my coffee.

You were waiting for the photo to go with that one, weren't you? Be HONEST. It's OK. (I did LOOK, but not for long...)

I didn't react to the smack outwardly to Bennett. Well, I don't know if that is entirely true. Let's be totally honest. I do. What I mean is, I didn't yell, hit him or start jumping up and down like a crazy person. All that wacky shit happens on the inside. But I turn more cold towards him. I'm less of the peppy, upbeat, sing-songy 'Time to Wake-Up!' Dad that he needs in the morning.

That is what sucks about it, that cycle. I can't find a way to be that Dad when he does something like that. He can't stop himself from doing it.

I have fears though, genuine fears, that this is not going to stop. I peeked long have I been writing about Bennett and his aggressive behaviors? How long have we been seeking more control? How many measures have been attempted and failed?

When I said yesterday that I needed to change, and that Bennett was the one that wasn't going to, that was only partially true. True, we ALL need to be more aware that he is the victim and he is the one who is disabled, and that we adapt to him, but at the same time, there does have to be some change with him, doesn't there? I mean, it would be foolish for me to proceed with my life thinking it is OK for a kid to walk around the house throwing objects and hitting, pinching and biting as a method of expressing himself.

And yet, how do I find the solution? For us both? What is going to happen if I can't?

Did I have an honest to goodness point to this particular post? Probably not. Maybe just an illustration of how often and how early my derailments occur, and how easy it is for the downward spiral of my day to begin. That was 7:08 AM. As the day progressed, I've written a little here, a little there, as time permitted, and I attempted to take the boys out to dinner. I'm on duty tonight, Jen's at work. Not so good tonight...Bennett was not very manageable. Had to bail and leave most of my meal uneaten.

I suppose that by at least trying to get them out of the house it was a step in the right direction. It may have shat the bed, but some other days it might not. Good times, bad times... But to have come nearly twelve hours from the Wake-Up Call to deciding to try and take him out? I guess that's what you call progress.

Though, don't get me started on how badly I am TOTALLY FUCKING up my older son. Oh...there are blogs aplenty to come on that. The boy can't stand me. And their relationship? Oh it bad.

Really bad. Working on it, trying to fix it with counseling and a bunch of stuff, but that is in a pretty bad tailspin. Especially tonight.

Only decided to put this in here because of timing, since today's blog has been written in around 7 different time periods, and right now things just settled down after a massive altercation between those two. Carter just can't stand Bennett...even more than most older brothers can't stand their younger brothers. Carter's resentment is much, much deeper. And I get it, I totally do. I just want it to change. I NEED it to change. But it can't.

There are honestly times I foolishly wish there would be some...I don't know, some person that would show up at my door with all the answers I seek. I know it is never, ever going to happen. But man, I wish for it a lot. That would just be too easy, wouldn't it. :)

So was there something positive to come from today? Yeah, a couple of things, and I'm clinging to them with everything I got, trust me. Cause these days, I'll take whatever good I can get.


Tuesday, May 27, 2014

The Running Man

I could say that the reason I had not posted in so long after The Triumphant Return was that I just enjoyed turning on my very close to death Dell laptop and seeing that oh-so-beautiful photo of Scarlett Johansson as Black Widow staring back at me. It was like she was saying 'Good morning pal...have a great day!'

And she was saying it directly to ME. Can you imagine?

So WHAT if that is one of the signs of slipping deeper into the abyss of pure insanity? Well, the truth is, that even if I said it, it wouldn't be true. Yeah I noticed the photo from time to time through my sometimes red flickering screen which I could get back if I twisted my LED display in just the right way, but the fact is? I was at another one of those nasty impasses.

When I rebooted this blog, I made a kind of commitment...but I found it to be one I can't keep. I said I was going to turn over a new leaf and be more positive, more upbeat...lay down a different set of cards here than people were used to seeing.

Wanted to. Really wanted to.

Finding it...difficult.

The hardcore truth? I got sucked into a downward spiral that is so hard to climb out of sometimes, and I find it difficult in these times to be positive about ANYTHING. And bitching about it? Well, I always feel like I am disappointing my Mom, my friends, my family, and myself, for not being a stronger, better man.


This makes it incredibly hard to blog. Because when I sit down to write I just want to blow out a wave of rants and jabs and wackiness. You know...everything I always used to do. Why I am unable to just be a happy-go-lucky, glass-half-full kind of guy? I'm not totally sure I was ever able to be that before The Incident, but the fact is, I have a severely disabled lad, and it makes life very, very hard. Those that are in this world? They get it. Those that are not? They try. Some get it a little. Most do not.

BTW, I am a glass-half-full kind of guy if you want to get technical. I just think that what is IN the glass tastes like shit. (Not my joke...I believe I heard that from one Artie Lang at some point.)

Now my mother? She amazes me. She really does. I've mentioned it here before, but only briefly, but I will say it again for those that may have missed it. She was diagnosed a few years back with a terminal illness. Rocked us all pretty hard. And you would think it would have rocked my Mom most of all.

To say instead she BECAME a rock, steadfast and determined, is the Galactic Understatement of the Decade. I've really never seen someone just give a hearty 'Fuck You' to what physician's told her and do it her way, and THRIVE. Radically changed her diet, and radically changed her outlook. Opened up her mind to ways of thinking I'd never thought possible, made volunteering a major aspect of her life, and Faith became a focal point for pretty much everything in her day to day.

She had not just gone past her Prognosis Point, she is thoroughly enjoying her life past her Prognosis Point. My opinion? The Prognosis Point is irrelevant now. She has as many years left as she chooses to have, and I believe that utterly. Can't explain WHY I do. I just do.

What a hurricane, that one, too. I mentioned that my sister had a big-time medical scare, right? More than just a scare, she fuggin' died, if you want to get technical. FIVE TIMES. She had a Ventricle Fibrillation. It was sheer luck (though many devout would say God's grace) that she happened to be living with someone at the time. This elderly woman co-habitant happened to find her and called 911. The EMT wunderkind did the shock pad whammy jammy on my sister, took her to the hospital, but she coded an additional 4 times during the whole process of transport and while at the hospital.

Five times. FIVE.

And yet, after that AND a pretty nasty few blasts of seizures, some memory issues and getting a defibrillator installed on her ticker, she walked out of the hospital on her own power around a week or so later on her birthday. Un-fuggin-believable, right?

My Mom lives in Arkansas. I live in Ohio. My sister lives in Baltimore. Because of circumstances, I was waiting for some folks to return to town to watch Bennett and would have gone to Baltimore on the weekend. That never materialized, because my sister's recovery was faster than anticipated, and so my Mom was actually on her way back by the time I would have gone out.

I had spoken to my Mom daily, several times a day, during all of this. And of course she sounded like she'd eaten gravel for breakfast and nails for lunch. Truth is she'd barely eaten at all. How can you when you spend most of your time at the bedside of your daughter wondering if she is going to live or die? Most of the readers of this blog? We've all been there....THAT is a feeling all of us have some idea about. It is one of the things I can honestly say to my Mom...'Yeah, I know how that feels.'

Not to mention the horrifying enigma of seizures. Oh how they fucking suck and how much do I hate them? Can't even tell you.

I mentioned the locations of the three of us because believe it or not it's relevant. It is easier to drive through Ohio to get to Baltimore from Arkansas, and back. So on the way back (not on the way TO, they were going Millennium Falcon speed trying to get there) my Mom stopped by to see us and the boys.

I'd be lying if I didn't tell you I expected to see my Mom looking like the Crypt Keeper. After what she had just been through? That's what I was expecting. She was about as far from that as you might imagine. She was monumentally vibrant, full of intense energy, much more than I had anticipated. She looked healthy and sounded great.

Now, could some of that have been for my benefit ('And the Oscar goes to...')? Maybe...but a lot of that you cannot fake, period. Not to these detail-oriented eyes. These VERY SAME eyes, I should remind you, that picked up a subtle tilt to Bennett's left eye MONTHS before he was ever diagnosed with a tumor or even had a seizure of any kind on the left side of his head, and every person in my life told me I was nuts. I have video evidence of that fact to back it up.

She looked and sounded fantastic. FANTASTIC. Even after the week of sheer Hell she had just walked through as her daughter's champion. I was amazed by that. I really was. Still am.

I wish I had 1/100th of her strength. I could do a lot with that.

But I block a lot of it out. It's my own fault. She uses Faith as a foundation, and I force Faith away as fast and as hard as I can, I am so consumed by anger and rage. Still. After all this time. It goes away a little, sometimes. When Bennett seems to be on an upswing, and then as soon as I think I have the makings of a bridge built, it comes crashing down when Bennett has his own downward spiral.

I don't know how to build a bridge that doesn't have Bennett Blocks in it, though clearly that is what has to happen. But I haven't figured out how yet.

He...saturates my life. In every possible way. And reader, don't take this the wrong way, I love the boy, I really do. That sounds horrifically negative to describe it that way, but when he is kicking the shit out of me after I am doing all the positive things I have been taught to do in order to manage his problem behaviors...all my PTSD wells up inside me and all I see are flashes of a childhood gone horribly wrong. I have to choke down any kind of reaction to the kid to get through whatever is happening as best as I can as my heart races and my pulse quickens and my hands start shaking.

Then, maybe after he calms down a little, if I can go find some place to be by myself and weep, I count myself lucky. I can release a little of the pressure that way. I have to chew, actually CHEW, a couple of Xanax, to get the symptoms to abate, that is how the GABA receptors in my brain have adapted to the drug, which I have simply taken for too long. I'm betting a single droplet of cannabis oil would be far, far better for my health overall and calm the symptoms. It simply is not legal here in Ohio.

But other drugs with far worse side affects? They all are legal. Bullshit. Sorry....tangent. I do that.

I don't know...I had the good fortune of going to the wedding of my good friend Mark a couple of weeks ago. I've talked about him here before. It was a great wedding, really well put together. And it was the very first second wedding I had been to of one of my friends. It had a different slant to it. Ashoken Farewell as the entrance processional? Genius move.

At the reception, many folk I had not seen in years had similar comments to make to me 'I don't know how you do it.' This was in relation to raising Bennett and the peaks and valleys that come along with it. And the truthful answer I gave was, there really wasn't anything to it. No magical potion, no mysterious incantation...we just get by the best that we can.

And sometimes not even all that good. I think we had an argument on the drive up there to Cleveland, and I know I've said it before, I'd never nominate myself for any Father of the Year awards, or Husband. This life if hard. Damn hard. Sometimes I am not sure that it is working at all.

But what is the alternative? I ask myself that question a lot. I guess there are a lot of them, none seem to be better than what we HAVE. That's what usually keeps my head in the game. At least a little.

There was a very peculiar series of circumstances that led me to writing this post. I started writing it after a comment left by SingleDad. A blogger whom I have a lot of deep respect, admiration and admittedly, an intense man-crush that rivals the one I have for Russell Crowe.

His comment 'I never read your shit. So, it's been two and a half months, wtf? Get off your ass, it's time for another post.', which of course I printed and hung up in the SingleDad shrine, next to the notes I have on how I wish I had a blog as well-organized and concise. My Tags and stuff are so all over the place I just need to dump them all and then figure out how the Hell I am actually supposed to use them. But the comment resulted in prompting me to get up off said ass and write. Didn't take me long to start a post either. The man has some pull.

But I was looking at my blog and thinking...JESUS. Two and a half months. Again. Wallowing in this hole of junk. Again. Back to this same place. Again. Rinse, lather, repeat. Again. I have become such a master at running away from my problem, never facing them head-on. Never taking the bull by the balls and actually making this all work.

This has been my self-perception about Me and my Relationship to Life in general for a long time. Most of the time, I tend to view myself as running away from it, rather than actively participating in it. Perhaps that is part of the problem. That PTSD reaction I described above? It can often move outward, like an energy wave, and consume lots of things around me. I don't even recognize the symptoms for weeks, until suddenly I do. When I am reminded by a person or a thing, a nudge of sorts. I am then shaken from whatever stupor I am in and realize...'Oh my God...I shut off again.'

Fight or flight...part of the human condition. And I learned early to defend myself I had to switch off certain parts of my inner workings. But there is tremendous cost. As a kid, it was constant flight, flight, flight, until I was able to fight. As an adult, it is constant flight, flight, flight...but this is my son we are talking about...I often wonder if I feel a sense of hopelessness because I know I can NEVER fight, that I must always choose the flight option.

Or...not? What if I have that all wrong?

Because what if what I actually needed here was a reminder that I have to look at it with keener vision?

This is not about me reaching any kind of point where I must learn to fight against Bennett. It is about the things I need to do in order to continue to fight FOR Bennett. Advocating for his needs. Though I must admit, I don't really know how to BE an advocate. But maybe I don't have to know how...maybe the act of doing this...writing about him, about us, our journey, is one part of it, and the rest I can learn as I go.

This was a point brought to my attention by yet another very peculiar coincidence involving SingleDad, if you want to call it a coincidence, in a video interview series he published on his own blog. In the third section, he mentions something I said (kinda sorta) and it involves, you guessed it, running away. I found it super crazy ironically weird. Since it has been so heavily keyed in to what has been on my mind of late.

In the video, a bit later, he talks about advocating, and it just got me to wondering if that was something that I do enough of for Bennett. Or even if it was something I was capable of doing. I just started thinking about it in ways I hadn't before.

I'm not suggesting to you that The Path of Advocacy is my path. I mean other than on a personal level when Bennett needs me to step up for him alone. Maybe it is maybe it isn't. Maybe I do it in some ways already and don't credit myself enough for it. Maybe I don't. The point here is that I feel I need to DO more than what I do, clearly. Actions need to occur that are not happening. If it as simple as writing here to keep myself centered, so be it, though I suspect more is needed. If I want to achieve any kind of new level of self-awareness, I have to push past some things.

See, Bennett is no longer the real problem here...I think the problem, truthfully, is me. I used to say that I suspected I would be the greatest enemy in all this. I think I understand why now. Bennett is a constant, a fixed element in our lives that is not going to change or go away. Well, at least HOPEFULLY not. (Knock wood.) What happened to Bennett happened, and it can't be undone. He has multiple disabilities, will always have them, and that is that. I do not have the power to change who he is.

All I have the power to do is change WHO I AM. To a degree. Can I stop the panic attacks? Not entirely. But I can try to manage the stress certainly WAY better than how I am doing it these days.

Certain things started to come into clearer focus for me recently. Take my Mom's illness for example. She isn't fighting the disease anymore. She's done with that. She's got it. She knows she has it, and there isn't a fucking thing in the world she can do to change that simple fact.

So she chose to fight it, by NOT fighting it. She went all Bruce Lee and shit and took the 'Be Water' approach...and it WORKED. Pretty amazing when you think about it. And philosophically sound, whether you believe in a higher power or don't believe in a higher power.

And not to put too fine a point on it, that is exactly what I am failing to do. Failing to let these things flow around me as easily as they should. And I have no doubt that I could probably go back and find a post or two where I touched on this very subject before, and still did not learn the lesson, still did not have the information STICK as it needed to.

This is the part of it that can be frustrating, not just about living through your struggles, I'm talking about writing about them. The writing part has its good elements and bad. You have a chronicled journey, such as it is, and that can be great to go back and look at (and some times it can be invaluable as a tool for what happened when). But on the other hand, you can look back, even at diaries you wrote in at age 16 and say 'Holy! I have been doing the same stupid shit for three decades!!!'

So where does that leave me now? Where do I go from here?

I don't know. If my track record holds up I most likely will do very little, and continue to push a boulder up a cliff. But that's my shitty attitude. And that's what needs to get kicked right out the door. I know it needs to...just having a hard time letting go of it.

I'd be lying if I said I have a plan. I do not. Days go by. I try to get through them as best I can. I don't like the way that sounds though. I need to get to a place where I can write a different sentence. A sentence like 'I make the most of every day that I have.'

But how to actually GET to that sentence? That's the part I haven't seemed to figure out yet. If I do, you'll be the first to know. Well, I will. But then I'll pass it along. Maybe. In two and a half months.


A Beautiful Blank Page

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 tem...