Monday, January 31, 2011

The F-Word


You know how much I love it. The way it rolls so effortlessly off the tongue. Or the fingertip. Oh F-Word, how I love to pepper you into every conversation, using you to spice up even the most mundane of topics.

Sadly, the F-Word I am talking about in this post is Flu, not the other one. (Well, technically it is an 'i-word'...INFLUENZA, but then I could not be clever, could I?)

This F-Word I hate, with a red-hot-poker-in-yer-ass* passion.

Bennett has it.

Confirmed.

Saturday night, when his fever was back up in the 104 range, we took him to the Urgent Care. You don't FUCK around (ah...there you are my old friend) with fevers in that range with a kid who has a history of Epilepsy, so off we went. They did a swab test and he did test positive for Flu. I didn't even know they could DO that. Shows you what a moron I am.


Well, at least he doesn't have any infections that we KNOW of. Yet.

But that means he is still home, and I am still tied up with him here. Cranky today. He is I mean. Well me too, but what can you expect. I wish I could teach him to blow his nose (among other things). It would make things so much easier for him.

Anyway, that's the latest on Bennett's condition.

Of course, it could be worse. Much worse. You always, ALWAYS, have to remember to keep your life, your kid's lives and everything in front of your face in the proper perspective.

Matthew Barr, a young boy I have been talking about a bit lately who also had a brain tumor and had been battling its effects for a long, long time, finally lost that battle on Saturday, January 29th at around 1:10 in the afternoon. Calling hours will be on Thursday, Feb. 3 from 2-4 pm and 6-8 pm at Devore-Snyder Funeral Home in Sunbury, if anyone who reads this is local.


I hope that this family will eventually find some peace. The last child's funeral I went to was one of the most difficult things I have ever seen in my entire life, I simply cannot imagine (well I can IMAGINE of course) the absolute grief this must feel like.

All I can do is hope that their family can stay together and heal and rebuild from this...what else can I do really? Makes me very, very sad. Makes me angry. All this shit does. Seeing all the pain and the suffering of people. Sometimes...I dunno...I just don't get how people maintain any level of Faith at all.

Every time I think I am about to make some kind of headway into repair work in that area, something happens to turn the tide in the other direction and my anger resurfaces. I can't seem to escape it. It is a very consuming thing.

Anyway...wish I had better news. I know Elaine was hoping for some (there was SOME in the Quarterly Review, though not at all what we were hoping for...but certainly nothing to be really discouraged by either). Hang in there soul sister. You know there always seems to be SOME bright positive that will show itself to us JUST at the moment that we absolutely need it to keep us from going over the edge.

OUT.





*Only a handful of people will understand this VERY inside joke. Sadly and ironically, they also probably ALL attended that child's funeral I mentioned above.

Friday, January 28, 2011

No Time


That is a real clock you can actually buy I think.

Me wantee.

Bennett is still sick. But in the grand scheme? Minor.

I had his quarterly review, have to talk about that, yesterday. The 'encounter' with the Home Health Aide who actually did show up to the house because she had no home phone as it turns out, so I was the one who had to actually tell her she was fired even though I didn't even hire her in the first place, have to talk about that.

And more, certainly.

Not a lot of time right now though. Perhaps later.

OUT.

Wednesday, January 26, 2011

Some Say the World Will End in Fire, Some Say in Ice


I say it will be some nasty virus that will have us all bleeding out of our eyes and ears and buttholes.

Hi...I'm back.

SO...I'm all settled in to watch the AFC Championship game on Sunday night, and 20 minutes in we lose power. For the entire game. No snowstorm. No record temperatures. No nothing, except for the fact that we live in a shitty neighborhood in a shitty small town on a shitty grid that loses power at least once a week.

It's usually a quick flash, but sometimes, and always when I am doing something I really WANT to be doing, it is for hours. I really wish I could afford a good goddamn generator, the kind that I could have set up outside that just kicks in when the power goes out so I never experience Service Interruptus again.

PERIOD.


But those things cost thousands. And thousands I don't got. I don't got hundreds neither.

Or grammar.

On the heels of that Carter gets sick with something, he's out of school for two days. Carter's kidney thing is also back...again. He's peeing blood/protein...again. This 'secondary infection', that rare (I've had enough of rare shit happening with my kids thank you very much) thing that happens to SOME kids after a strep infection in the kidneys that usually goes away?

His isn't going away as it is supposed to.

It is now seemingly getting worse, not better. A specialist visit has now been put into motion to be scheduled. Nephrologist. Pardon me in advance for this...FUCK IT FUCK IT FUCK IT. I hate worrying about both my boys simultaneously. It ages me in ways you cannot imagine.

I FUCKING hate it.


And now Bennett is out with the same fever/cold that hit Carter earlier this week. His Quarterly review (OH JOY) which got moved from late last week to this week may get moved yet again (OH JOY), depends on what happens with his fever/cold.

The agency who handles the Home Health Aide for us had been continuing to look for a replacement Aide for us. Couple weeks ago the woman there called and said they had found someone they were talking to, someone a bit younger.

Hadn't heard back for a while, couple days ago she calls and says she is sending someone over yesterday night to meet Bennett at 4:30 and see how it goes and maybe take the open slots.

Cool.

At around 6:50 PM the phone rings, and the woman is on the phone (the one who is supposed to be coming, not the woman at the Agency). She is lost. Let's call her...Wanda. Short for Wanderer. (Not using real names here). She was calling from a gas station, as she did not have a cell phone.

Now I don't have a cell phone either so I can't really be a judge of anybody here, but I am also not working for anybody right now other than me and I am not commuting what would essentially be, for her anyway, FORTY minutes at least. That's a very hinky thing in my opinion, though as she later explained it she has yet to 'get on her feet'.


But it was at that point, when she called, I gotta be honest with you, that my Spidey-Sense started tingling. I need someone 'on their feet' already. Sound cruel? Harsh? Keep reading. You'll understand later.

I left at that point. I needed to go to the store. I needed to buy some straps. You know the kind of straps that you use when you want to, say, strap a motorcycle or ATV to the bed of your truck to transport it? Well, I don't have a motorcycle or ATV and I don't have a truck.


What I do have is a developmentally disabled kid who seemingly has no fear or no ability to really learn just how truly dangerous some things really are, and like a moth, he is attracted to glowing orbs of light. He now thoroughly enjoys pulling out a kitchen chair, climbing up on the kitchen table, and then reaching as high as he can to try to touch the large round kitchen light fixture.

This can happen with incredible speed even if you are watching him with dutifulness, which I was the other day when I saw him take a header off the edge of the table. It was only my mongoose-like reflexes and the fact that I possess the speed of a very fat cheetah that I was able to leap over and catch him.

It only cost me the pain-free use of my back for the next two weeks.

So the large strap is for the chairs. It is to be wrapped around the table and chairs, like a Christmas ribbon around a gift, to keep him from pulling the chairs out to use them as a step to climb up on the table. I swear to you...our house really is starting to look VERY bizarre with all the rigged shit in it. Velcro tape around stuff, padded edges, special screens on the vents, and it will continue to morph as he ages I expect.

In the Spring this year I will probably have to install some type of bar system on the windows. Not to keep out burglars. But to keep Bennett from falling out. I know, I just know, he will be pushing on screens.


Anyway, I get back from the store...it is around 8:00PM. A strange car is in front of the house. This much I expected, as I figured Wanda would be there by then. I did not expect Wanda to be sitting in the vehicle. I pull the car into the garage and go out to the driveway and introduce myself and ask her why she had not gone to the door.

She said she did, but no one answered.

I went in and invited her in. Jen and the boys were upstairs. Bennett, who had just started to feel bad (and run a temp) had not napped that afternoon and she was putting them down (meaning 'putting them to bed', not 'you're Momma!'), so she had not heard the doorbell. Wanda was in the process of writing a note to leave on the door as I arrived.

We all chatted a bit, and that was when I found out where she lived, which ironically was in an area on the Southeast side where I used to live. Holy SHIT that's a hike. IN fact, such a hike, that to do it without a cell phone was downright dangerous. How in the world would she be able to tell us that she was running late? (I wondered internally...I was very pleasant in person.)

Look, she was a nice woman, and it was clear to me that she could use the job. But in the end, that's not good enough.

With our last Home Health Aide, I let my emotions cloud my judgment. I liked her. I let the fact that I liked her personally influence how I handled her job performance, which had some ups and downs. I let her get away with things I should not have, and THAT IS MY FAULT. I swore to myself that when the time came, I would not let my emotions get in the way again.


The time had come.

So today, I called the agency and told them to please call Wanda and not have her come back as Bennett's Home Health Aide, and I explained why. I said it was nothing personal. She seemed like a very nice person, that she might have even had a great rapport with Bennett, but she never even MET Bennett, as she didn't show up until around 7:30-ish, had no cell phone with which to call and tell us she was lost, and everything else from above.

I told the woman at the agency that in my experiences of managing employees, and I have had about 8, the ones who live the furthest away always call out sick the most. It is an absolute fact. And it is almost always related to weather, but still, it happens. And the fact that she had no cell phone to be able to tell us that she was going to be late would drive me crazy, because it used to drive me crazy with our last Home Health Aide who HAD a cell phone and did not call to tell me she was running late.

I have a HUGE pet peeve about tardiness. HUGE. If it starts like this, and you get a bad vibe, you gotta go with your gut.

There were other things, some intangibles, that I wish to keep to myself.

Look, I want the help. We NEED the help. We are in the red as far as stress levels here at the house. But I also will not settle. Period. Not worth it. Call it foolish pride. Call it learning a thing or two from seasoned veterans like SingleDad, men I have learned to admire and respect in how they manage their lives and how they navigate the bullshit.


Call it what you will. But we will wait until we find the right person, we will not just slide a body into the mix to fill the slot.

So, that's been the last week in a very large nutshell. That, and Matthew is still hanging on, though barely. The latest update from his Mom, written this morning, was this.

Matthew is still here with us. Barely. We were up practically all night, he got morphine and atavan every hour to keep him calm and comfortable. I've been holding him since 5 pm last night. I don't want to let him go.

I know many of you carry your Christianity cards with pride. I don't. I shredded mine a while ago. I didn't throw it away. It sits in a pile somewhere next to a roll of Scotch tape and the possibility of reconstruction. But the rest of you still have yours, so use 'em.


Not for his recovery...cause we all know that isn't happening. For his family. I cannot imagine anything worse than this. If there is a Hell on Earth for a parent...this is it.

I really feel such a stinging, raw sadness for them and hope that they can find some strength within each other to make it through the days to come. I have a sense that it's getting closer now to the conclusion. What an awful, awful, awful thing for anyone to have to go through. I really just don't get it.

At all.

OUT.

Sunday, January 23, 2011

New Steelers Coach (If Needed)

Just occurred to me that if the Steelers ever needed a fill-in at a press conference for their very talented and well-respected coach Mike Tomlin if he was unavailable or something...


...he does bear a striking resemblance to J'ywz'gnk Kchhllbrxcstk Et'nrmdndlcvtbrx, more commonly known under his stage name Joh Yowza, one of the singers for the Max Rebo Band, the stage performers in Jabba's Palace in Star Wars Episode VI: Return of the Jedi.

Just a thought.

See? I don't even NEED weed. I can think this shit up all on my own.

OUT.

Friday, January 21, 2011

The Psychology of...Blogging?


I have a friend named Kim, whom I have mentioned before in these hallowed pages of Blogzilly. She sends me goofy images to make me laugh most of the time, taking the edge off of my sharper days. Stuff like the above image.

Other times, she sends me things to provoke thought or help me answer questions she knows I am seeking answers to.

Funny that.

It is, at times, as if the glory days of Palisades Toys have not ended. There we are, like Batman and Robin, a team again.

Kim has a great deal of that traditional Southern humility. She would argue about how minimal her role was compared to mine at the old P, I would argue that the best work that came out of Palisades was when she was there.


The fact is, that she really was the final piece of the puzzle when it came to filling out the whole picture in the Product Development department (though there was ONE addition to that puzzle, an unexpected one, call it an unplanned pregnancy in the Product Development family...that I plan to discuss later), and that's why everything started to really get as good as it could be with her arrival.

But I digress, as usual. I could write a book about Kim. I could write a book about a lot of things, anyone want to set me up with a book deal?

Anyway...Kim sent me this article, about the healing power of writing or crafting a narrative or your life when it comes to psychotherapy and I wanted to share it here.

Why? Because I think it applies not just to me, but to a HELLUVA lot of you, too.

We all use our blogs, many of us do anyway, as therapeutic tools. I know I do. I have the telephone number here of a psychologist I have been meaning to call for months...MONTHS now, and I haven't. The main reason is that I find that writing is more therapeutic for me than all the times I have ever spent in chunks in therapy.


And I have spent some chunks of time on the couch, in case you were wondering. I have zero shame...ZERO...in admitting that. There is a stigma in this society about that, one that I have never understood, but I SO do not see it that way.

To me, mental health, and the search for improving your mental health, is NO different than walking into a gym to improve your body, and there is no stigma attached to that.

But people are afraid that others will think they are nucking futs. Oh well. Those people, who leap to the instantaneous conclusion that anyone seeking help for their mental health issues are about to run to the top of the nearest clock tower with a Dragunov SVU and start plugging away at innocent civilians, deserve to be the first ones in the cross-hairs.

Here's the article, published in the Scientific American and written by May Benatar.

--

Psychotherapy and the Healing Power of Narrating a Life

An important part of the psychotherapy process, as I understand it and have practiced it, involves constructing a narrative of one’s life.

This may seem like a curious task given that we all know or should know the story of our lives. We’ve been imagining the movie to be made from that story forever, right?

Well, that may be true of some us, but a surprising number of people actually don’t have a coherent story: something that hangs together, makes sense, and has some internal consistency. The story may have large, important chunks missing. Or the narrative is fragmented and chaotic. Sometimes the story is there but it is self-condemnatory and unfair.

A woman who was raped at the age of 16 was telling herself that she consented to sex with a man much older than she was, someone she barely knew. She thought of herself as a slut. All the adults in her family would agree (if they knew the story): a 16-year-old is a grown-up and responsible for her actions.

I had her look up the definition of "statutory rape."

It took years for her to empathize with her frightened and confused 16-year-old self and to re-structure the story to reflect her naiveté, fear, isolation and vulnerability at the time.

Our stories may not be our own. We may have adopted the stories of our parents, grandparents, siblings or some other authority figure rather than having developed an account of our own experience as we felt and perceived it.

To construct a story of our life is to make meaning of it. To compose memory, emotion and internal experience as well as autobiographical facts into a story helps us to become who we are. Interestingly, story-telling is taught in school very early: in pre-school and kindergarten. A pre-school teacher noted that children’s stories often become autobiographical quite spontaneously. The children include details of family life without prompting.

Story-telling is an important part of self development. The narration that has gone awry can be addressed and realigned in psychotherapy.

There is compelling research evidence that the coherence of a primary caregiver’s autobiographical, relational story is a key component in parenting. There is good reason to believe that the quality of children’s relational lives, as well as their sense of security in the world will be positively impacted by how their parents have come to understand and narrate their own relational history.

What researchers found was that a strong predictor of stable, secure attachment in babies was the primary ability to recount a coherent story of their own lives. That story doesn't need to be historically accurate. It does not need to be positive. It is not necessary to have had a happy childhood. All that is necessary is to be able to tell both yourself and an interviewer a story that hangs together and makes sense.

This is how coherence is described by the one of the researchers:
...a coherent interview is both believable and true to the listener; in a coherent interview, the events and affects intrinsic to early relationships are conveyed without distortion, contradiction or derailment of discourse. The subject collaborates with the interviewer, clarifying his or her meaning, and working to make sure he or she is understood.

Such a subject is thinking as the interview proceeds, and is aware of thinking.

This assertion comes from the attachment literature in which adult caregivers’ "attachment status" is evaluated as a measure of the quality, stability and security of the adults’ relationship bonds. This in turn was correlated with the attachment status of their offspring.

Given the robustness of this research finding I don’t understand why everyone who wants to be a parent or is a parent doesn’t run to their nearest therapist. It would seem to be the best argument for undertaking the admittedly arduous, expensive, and sometimes painful process of psychotherapy.

So many of us have accepted someone else's version of our lives. If you have always been told that your childhood was idyllic you might be tempted to go along and not validate some of your own memories or even weak suspicions that things were not always perfect. If you were always told that you were an overly sensitive child you might buy this wholesale. Never mind your own dim sense that people were actually pretty mean to you.

People in therapy are often concerned that they are blaming others for their problems and this seems unfair. Their empathy for their parents and siblings will make it difficult to empathize with their own younger selves. Empathy for others, those adults who did the best for us growing up, is a positive thing. But not if it’s prioritized over empathy for the self.

It is truly amazing how much fog, depression, confusion and anxiety begins to lift when the story one narrates starts to be one's own. It needn’t be a pretty story or even a wholly accurate story—just one’s own.

A college freshman grew up "knowing" he was just like his father: a depressed, somewhat ineffectual man who had problems functioning at work and at home. The father was bedeviled by chronic procrastination and low energy and a robust depression. As a result the job he held did not reflect his true talents. The family struggled financially.

The young man was brought to therapy for some of the same issues. Despite a very high IQ he was barely passing his classes at school. He had trouble getting his work in on time and was virtually paralyzed when he had a writing assignment. He saw himself as depressed, learning disabled, and an all around loser. His "diagnosis" was confirmed by mental health professionals who put him on anti-depressant medication and medication for ADHD.

An important chapter in our work together was getting him to re-address the story of self he had constructed, i.e. that the apple lay right next to the parental tree. Psychological testing ruled out ADHD or any learning problems at all. He suffered from self esteem issues but was not seriously depressed. Perhaps he was not the "loser" that he had told himself he was?

With a lot of support and constant re-addressing of his basic assumptions about himself, this young man was able to construct a narrative that had more complexity, nuance, and coherence then the family story he had been sold and had bought. He went on to finish college with good grades and an ever increasing robust sense of self.

As examples above - both the rape victim and the young man who saw himself as a loser - illustrate, the enterprise of creating an authentic and coherent narrative of self is an important part of the complex enterprise of psychotherapy and one that pays great dividends in an unfolding life story.

--

About the Author: May Benatar is a Licensed Clinical Social Worker in practice as a psychotherapist in the DC metro area. She has her PhD in clinical social work and has published, taught, and consulted on the topics of adult development, parenting, and the treatment of the long term effects of psychological trauma. May blogs at Posts from the Unconscious. Please come by and visit.


--

Hope you enjoyed that little article. I sure did. It validated a few things for me. Not that I needed any. It also made me think how much I want to get some of my hand-written journals of old entered into the computer.


Anyone know of any software that can do that? Or is it just gonna come down to me pulling out those old notebooks and transcribing it one page at a time?

Oh good God that's gonna be tedious.

'...and then I slipped her a note in class and then she even said she LIKED me! Isn't that swell? Gee whiz!'

OUT.

Monday, January 17, 2011

Home Alone


I'm home alone today...with Bennett.

I'll let that sink in for a moment before I continue.

Yes.

It's true.

Did I mention before we lost our Home Health Aide? Not like she's dead or under the sofa or anything, she went to Nursing School. She hasn't been replaced yet. They are hard to find for what we need.

Besides, most seem to prefer chilling with the seniors, cause they provide longer blocks of hours and are probably a lot easier to deal with than a kid who screams, kicks, hits and bites and can't tell you what he wants half the time, but the other half is as sweet as a home-baked apple pie.


So any time now, when Bennett is sick, or his school is closed, since I am the one who has the most flexible schedule I get the duty (and the dooty).

The day starts with The Meltdown.

Once he realizes that Mommy isn't coming back, it gets better. My man-boobs just are not as satisfying I guess as Mrs. Lilly's. I can grok that. She also has hair, which he digs tugging on. I'm telling you. Hair piece. I am seriously considering one.

Anyway, gotta keep it brief, I have a boy to keep an eye on. And both are required. In the meantime, you can check out Luke Milton's review of his Admiral Ackbar figure. I haven't had a chance to READ the review. But I am sure the written review is as good as it gets. Back when I worked for Palisades Toys (yes, back when I actually MATTERED), his Punchbunny's Drunken Review of the Week on our website was, to me, the crowning achievement of our fan-provided content.

I will say this...as I writer he smokes me in every conceivable way. In fact, he's so good I won't even bother to WRITE an Admiral Ackbar review, or a Gamorrean Guard for that matter, which I also picked up. But my Ackbar photographs below? I can finally call myself a WINNER.






OUT.

Saturday, January 15, 2011

Waiting for Goliath


It is a cold, blustery, dreary Saturday. Very cloudy, but no precipitation is supposed to be headed our way unfortunately. I'm a snow freak. I love the white stuff. None today though.

I noticed my Ravens flag is all ripped up. I put it up THIS YEAR. The quality level of the 'official' NFL licensed flags is SHIT.

That's my 'official' review. Nuff said. I don't think I am getting anymore or allowing anymore to be given to me as gifts. Time to get one hand-made.

I've been trying to keep myself occupied and not think too much about today's pending Divisional Playoff Game between the Baltimore Ravens and the Pittsburgh Steelers. I attacked a few drawers...yes, indeed, I am in fact taking it 'One Drawer at a Time', and it feels pretty good.

Went to the store and just bought a new roll of Velcro Tape. Fuck it. Why tear the house apart for something if I have no idea where it is? Problem solved.


And yet today still has an odd feeling to it. I'm sure Steelers fans feel very differently. They must be salivating, I'll bet they feel like the Ravens are being led to Heinz Field for the slaughter. Maybe they have every right to feel that way.

With Joe Flacco as Quarterback, the Ravens versus the Steelers with Ben Roethlisberger at the Quarterback position are 0-5. That is a startling statistic. The two times the Ravens have beat the Steelers with Flacco as Quarterback were the two times Roethlisberger was not playing Quarterback.

Steelers fans also love quoting that particular stat. I would too if I were a Steelers fan. I get it. You should be proud of your team and support them. Trash talk and make fun of your opponent and all that stuff. It's supposed to be fun and I totally understand.

Besides, the loser is ALWAYS an easy target.

It doesn't MATTER that the games are always close. It doesn't MATTER that the Ravens never, EVER lay down. It doesn't MATTER that every game comes down to one or two key plays that swing the game one way or the other, usually in the favor of the Steelers. And I say that not to take ANYTHING away from the Steelers. Anything at all.


I am here, a Ravens fan, and I'll write it with no shame whatsoever.

The Pittsburgh Steelers are a FANTASTIC football team and a very respectable NFL franchise, one of the best in the league. They have the most Super Bowl rings and they should be respected by every NFL fan if you call yourself an NFL fan.

Period.

Why do you think the Ravens, Bengals and Browns ALL have to design their teams to beat the Steelers, the team that is THE team to contend with in the AFC North? I don't think that is a secret to anyone.


Years ago, I worked for a company called IKEA. For four years.

I started doing some Kitchen design work there and then I moved into Graphic Design. One of the things they do is send out groups of people from existing stores to new stores that are being erected to work together to get the store put together before it opens for business.

This process takes weeks, and when you are a young, single guy, it can be a lot of fun to travel somewhere for a month or two somewhere, get paid to do it, meet new people, stay in a hotel and all the while see new places and things.

One such trips was to an IKEA near Los Angeles, in a suburb called City of Industry. I spent around six weeks there. This happened to be during the time of the Rodney King riots and a rather large Earthquake, which TOTALLY tainted my opinion of Los Angeles, but that's another story entirely.

You get assigned a roommate in a hotel suite.

My roommate was a French dude named Guy. It was pronounced 'Gi', though. And yes, the stereotype was at least true in Guy's case...whew...the dude really did stink. He showered MAYBE once every four days or so. I never understood it.

But he was a helluva nice guy, and eventually I got used to it.


Guy had a singular passion for tennis. I also played, and I brought my racket. We played every single day I was there. I was actually pretty good.

Guy was better. And he liked that. But I played him hard every single day. And I liked that. His skill level forced me to bring my 'A' game every time, to stay completely focused. To play at my absolute best. He forced me to be a better player.

Every day I kept at it. Kept trying. He never blew me out. Yes, he was always winning, but he wasn't winning by enormous point differentials. He had to earn each and every win. These victories were NOT free. NOT easy. Some of them went into multiple Advantage changes again...and again...and again, until finally he found a way to deliver a killing stroke.

At the end of the fifth week, my time finally came.

I beat him.


I can't even begin to tell you how completely and utterly sweet a victory like this tastes. It is unlike ANYTHING else in the world.

When you lose, and lose, and lose...but never give up, and then find a way to finally overcome your Goliath and take him down it is...something that you will never forget. It is a euphoria that, unless you have experienced something like it, I can never put it into words that can do it the justice it deserves in order for you to truly appreciate what I would be trying to convey.

And the truth is that the Goliath doesn't really savor their 'wins' in the same way. They become expected. They become commonplace. They become so interwoven into the fabric of their life that when they finally LOSE, it is often shocking, sometimes devastating.

I do not know if this is a cultural thing, or if it is simply something that was only true of this one man, but Guy only played me one more time, the following day, and while I came close, I did not win. Not that I was expecting to, but I gave it my all, just as I had every other time.

He then refused to play me again. He always had a reason why he could not play. Some excuse.

Funny that.

I think the last game was so that he could re-establish a personal dominance feeling with a 'win', and THEN terminate the relationship. A sort of 'You can't fire me, because I QUIT.' type of a thing.

Fuckhead.


I never understood that.

But it didn't matter to me. I got my one victory. It was all I wanted. It was all I needed.

I toppled my Goliath.

So keep that in mind, Steelers fan. Yeah, you might kick our asses today. You may still next year, or the year after that. But fortunes change. They always do.

For over a thousand years, Roman conquerors returning from the wars enjoyed the honor of a triumph - a tumultuous parade. In the procession came trumpeters and musicians and strange animals from the conquered territories, together with carts laden with treasure and captured armaments. The conqueror rode in a triumphal chariot, the dazed prisoners walking in chains before him. Sometimes his children, robed in white, stood with him in the chariot, or rode the trace horses. A slave stood behind the conqueror, holding a golden crown, and whispering in his ear a warning: that all glory is fleeting.

OUT.

Thursday, January 13, 2011

Perspective


Panic starts to set in with some folks after day...say 5 or 6 of no entries coming in. The 'OSM' needle (that's the 'Oh Shit Meter' in case ya didn't know) gets up there into the red zone and alarms start going off, whistles blow, I guess maybe a bunch of S.W.A.T. guys start leaping out of helicopters and busting down doors and shit in their brains.

Well, maybe that's an exaggeration, but it's a freakin' COOL exaggeration, yeah?

Truthfully, I've been a WEE bit more melancholy this week than usual. Can't put my finger on anything specifically. Nothing overtly bad has happened. Not to me anyway. I'm not swimming with any floaters wondering what the hell they are or anything weird like that...just have the winter doldrums I suppose.

Doesn't help that I've got a slight cold and Bennett has one too. Besides...that'll pass. Though my throat is beginning to swell, and since Strep seems to be making the rounds at Carter's day care...AGAIN...well, I keep missing that bullet, but I can only go Matrix for so long with that before eventually I'll get hit.


We've had an unusually high level of tension in the house of late. At the end of December, our Home Health Aide left for Nursing School.

Since, she has not been replaced. The extra strain has been formidable. Which I find interesting, because especially near the end, when the aide was calling out a lot more, showing up an hour, maybe an hour and a half late I was under the impression that not a lot of good was coming from her being here.

I might have misjudged that a little. There clearly was some, I just expected more in the way of showing up and being on time and being a LITTLE bit more of a self-starter instead of always having to be programmed. But like I've always said. I'm new at this. Maybe that is the best that you CAN expect from a HHA? I don't know. HELL...I don't even know what to expect.

What I do know is the strain on the two of us is showing. Clearly.

In a perfect world, I wish someone could be here that not only watched Bennett, but TAUGHT Bennett at the same time, worked with him, helped study his behavior and ours and helped us learn how to help him. But that's a perfect world.


That doesn't exist.

There is some additional crust on my spirit right now, some extra heaviness in my soul...as there are others in FAR more dire straights right now. I think that maybe this has kept me from being able to take a lot of joy from anything lately.

I should point out that Austin, one of our Infantile Spasms kids, will be going into surgery VERY soon, so keep an eye on his progress. I know that's been on my mind a lot. I don't know why, but whenever the new kids start down Surgery Road, I always get weird. Why? No idea. I'm sure there is something to that, I'm too tired to dig. Get Sallah to do it.

And then? There is Matthew.


Matthew is a local boy, who I only know about because Jen's cousin knows his family, otherwise my path in life probably would not have intersected with his in any way. I do follow his CarePage on their hospital website, though I don't comment much if at all. I never know what to say.

Yeah...you heard me. Yer thinking...How in the world can YOU not have anything to say? Well, because Matthew's story is a difficult one to even write about. I won't even go into much detail here, but I will say that his story began with a brain tumor, a nasty one, in 2006 I believe.

He and his family have been battling it ever since. Craniotomy, radiation, chemo...there are times when it appeared that they had achieved total victory only to later find something had re-surfaced or some aspect of Matthew's condition had changed.

I'm not telling his story very well at all, I'm piecing together what I know from their site, what I hear, etc. I, very sadly, am not the type of person who has the balls to drive down to Nationwide Hospital and visit the family. I don't know them well and even though I know Angie it might just creep them out. I am essentially a stranger.


See, that's where Matthew is right now. At the hospital here in Columbus.

This time however, he will not be leaving.

The family is aware of this, and Jen, Matthew's mother, writes updates on the CarePage as often as she can. They are...heartbreaking, as you would expect. I simply cannot perceive the agony of what these parents are going through, have gone through, now and over the past several years.

She updated the CarePage yesterday, letting us know how Matthew was doing, etc. Her last sentence hit something in me, it was the endpoint on a day that really found me in a strange place.

'There are no words to describe how hard this is.'

Yeah. I can't imagine that there are.

I was so...humbled by that sentence. I'm so dumbstruck by that family and their experience.

Not an hour earlier, I was balls to the wall crying, a sobbing mess. My eyes swollen, my face red, my cheeks covered in tears, I did the best I could to muffle the SOUNDS, but the visual evidence was still there. So even though I had tried to to keep it quiet as luck always has it Jen walks in and catches me at the tail end of it and wants to know what's wrong.

Ashamed and humiliated, I had no choice but to tell her.

'I can't find my Velcro Tape.'


Before you start asking me for my dress size, I do have an explanation. Bennett had been home sick all day. My nerves had been pushed to their limit already. I've also been sick with some kind of stomach bug. Earlier, I spilled sauce all over myself. The Nurse who was supposed to come re-certify Bennett for this Home Health Aide thing was a no-show but had someone else call to tell me that she'd be here 5PM tomorrow but then that person hung up the phone BEFORE I could say 'Um, Bennett WON'T be here at 5 PM tomorrow though...'

Also, found out that at Bennett's school his Speech and OT was still weeks, probably months away from starting, and mind you, he was put on the 'waiting list' to start these additional therapies there as early as July of 2010. I was asked if I was still interested in these therapies. A headache started at that time. It built throughout the day.

Remember in Indiana Jones and the Temple of Doom when that poor dude had his heart ripped out by Mola Ram, the villainous leader of the Thuggee? John Williams has this wild drumbeat music playing in the background of that scene, that build and builds and builds, getting louder and louder and louder, and the beauty of it is that it is so seamlessly interwoven in that you are barely aware of it as you watch the scene unfold.

But...if you ever were to happen to listen to the original score, without the visuals there, it is truly horrifying and brutal on your ears and that's exactly what my head was feeling like all day.

I was half hoping to see Mr. Ram and ask him to rip my brain out of my head for me.


Then I find out Bennett has a new activity. He finds great joy in opening the refrigerator door and slamming it shut. The bottles and other object make such a delightful sound that he finds so funny that he laughs and laughs and laughs. Oh MAN is it the funniest shit he has ever heard in his 3 years of life. He can do this forever.

Last night, early evening, he seemed poised to do just that.

SLAM. SLAM. SLAM.

I was going batshit crazy. BUT...yes, I am not as dumb as I might appear, despite my tendency to showcase boobies. I was prepared for this. I HAD PLANNED FOR THIS.

SLAM. SLAM. SLAM.

I knew that, one day soon, he would figure out the refrigerator door and that I would need to be ready for it and I would need to have a solution on hand to be able to install a human-proof device that would keep shortness from being able to open the door to the magic kingdom.

SLAM. SLAM. SLAM.

I even have a special plastic bin in the basement labeled CHILD SAFETY EQUIPMENT with all the things in it that I need for 'proofing' the house. Soft edging, door handle stuff, all that crap.

SLAM. SLAM. SLAM.

I went to grab the thing I had bought for the refrigerator door. It wasn't there.

SLAM. SLAM. SLAM.

I looked a few other places. Couldn't find it. OK, I'll use the Velcro strips. Temporary solution but it will at least stop the bleeding.

SLAM. SLAM. SLAM.

A few months earlier, I had bought a roll of, well not strips really, essentially a roll of Velcro 'tape', that I used to bundle together a lot of the wiring around the house to keep Bennett from getting all tangled up or interested in messing around with any loose wiring or cords.

SLAM. SLAM. SLAM.

Couldn't find the Velcro tape. I'd just had it out. Couldn't find it. Looked around. Looked a lot of places that I figured it might be.

SLAM. SLAM. SLAM.

Nope. Nada. Nowhere.

SLAM. SLAM. SLAM.

Levies break. Water everywhere. I just couldn't take it anymore.

But Jennifer's question was legitimate, despite the fact that she, and rightfully so, just as I am sure you are doing, she asked it in the middle of trying to choke back her giggles. Yes, she thought it rather silly of me to be crying over my inability to find a roll of Velcro Tape.

I suppose it was.

I slid back from the kitchen desk and pulled out each drawer. I stood up and opened up the cabinets. Each was stuffed, and I mean stuffed, with papers, objects and various bits of other junk. Most of which had no business being there at all. It was a fucking MESS. You could not make heads or tails of anything.


'This is why,' I said. 'I hate that this is what our life has become right now. All we ever have time to do is stuff our shit out of sight or just make piles out of all of our crap. We can't organize anything, we can't keep track of anything. I couldn't even find Bennett's IEP, I had to ask for a new one! We never have time to do anything but deal with today, so how am I supposed to even figure out what I'm going to do about my tomorrow? Our tomorrow? I have no 'real' job, no idea what career path to take. I have no plan, I have no order. I can't hear myself think half the time and I'm so out of whack with everything that I can't even find a fucking roll of VELCRO TAPE!!! I shouldn't even be looking for Velcro Tape in the first place, because I bought a fucking thing for the fridge to TRY to plan for this and my head is so far up my ass I can't even remember where I put the fucking thing because I was too damn stupid to put it RIGHT into the bin the minute I walked into the front door with it and I probably set it down somewhere instead because I was distracted by whatever and now who the hell knows where it could have ended up? How in the hell am I supposed to take care of this boy and you and this family when I can't even take care of myself?'

We just looked at each other. We were both suddenly very, very puzzled.

It was so...so...quiet.

At that moment, we both realized that someone had decided not to slam the refrigerator door anymore. Bennett was instead FAR more entertained by standing there and watching the two of us. We couldn't help it. Seeing him watch us, smiling like that?

We just laughed. What else can you do, really? At the end of the day, you recognize that maybe some things aren't so overwhelming after all, even if they sometimes feel that way. You have to pick and choose which things you are going to go crazy over, and which things you are not. Plain and simple.

And this was an EASY day, relatively. We've gone through and will go through worse. If you try too hard, you can really drown yourself thinking too much about how you are going to fix all of life's problems in a day. Besides...you can always try to take it one drawer at a time. It's very important to keep that kind of perspective.


Not just in the Special Universe. In ANY Universe.

Especially when you then sit down, less than an hour later, and read the words written by a mother experiencing a level of pain that is unable to be measured by any standard imaginable. How insignificant everything else really is, when you compare it to the staggering tragedy of a parent watching their child slip away from them, day by day.

'There are no words to describe how hard this is.'

Every molecule in your body believes her.

Every. Single. One.

OUT.

Saturday, January 8, 2011

Expect Blogger Re-Work




Seems like everyone of my buds out there in the Blogiverse is changing up their blogs. Some of them are looking quite spiffy.

I've been wanting to make some changes for a while, and now I just gotta. The itch is getting far too big not to scratch. Though I hear they make a special shampoo for that now.

So if you see a lot of weirdness around here lately. I mean, weirdness VISUALLY beyond the weirdness you usually see, it's because I may be trying to work out a few kinks to find the right layout and look I am trying to achieve. Bear with me. I will only be able to devote so much time to it at a clip.

In other news. I can't feel my toes.


Jen's Dad and her brother were here this morning, doing most of the work while i tried to help as best I could installing a new garage door opener on the second garage door we have and the only one that does not have an automatic opener. It's fugging cold out there, in the twenties. I had some heaters out there, they did two things. You know...the two things that useless things always do. Jack and...you know the rest.

The job is not totally complete, since we have some repair work to do on the actual door itself, but the opener is installed. But man oh man my toes HURT. Fingers too. One of these days I really need to invest the money into some real cold weather gear. I say that every year, and every year I freeze my gonads off.


In yesterday's blog comments, you may have seen Zoey's Mom Heather mention some bathtub photos of Bennett and how cute they were and said 'Huzzat?'. Well, those were on Facebook. But far be it from me to deprive the Socially Network Challenged, so here are a those pics, and a few more.

Having HUGE problems with color and light balances on my camera though. Trying to figure out what I am doing wrong. Main issue I think is a tale of two monitors. On one monitor things look great. On another? Shit. I gotta figure it out.






I miss the boys. They are at their Aunt Mandy's this weekend. House to myself. SO...quiet. But football is on right now, so I'm in heavenly bliss. So yes, I do miss them but I do feel a few new chest hairs growing in.

And no, Claire...*GASP*...it is NOT just a game.

OUT.