Showing posts from February, 2011

My Self-Portrait

Just had it taken at the local Photo Studio.

Like it?

You ever do something you almost instantaneously regretted, but by the time you did it there was simply no way you could get around the fact that you have zero chance of taking it back? name is Ken, and I am a Horse's Ass.

You've heard me mention Mandy, my wife's sister, many times before. Mandy has always been one of my greatest supporters, and if you recall, she was instrumental in helping me keep my marriage intact back in the summer when it was teetering on the brink.

You have to understand something about Mandy to fully appreciate what a Class A Buttholio thing I did. Mandy would not even hurt a bug. She's the type of woman who would take a bug out of the house and not kill it. You know the type of person I mean, and I know...THE BUG THING annoys me too, but that doesn't make that person any less sweet or genuine.

And that's what she is...genuine. You'd never meet another person as eager to help y…


OK, so I had to do SOMETHING to try to be a little different. And...this gets people's attention.

Remember what John Doe said...'Sometimes you have to hit them with a sledgehammer...'

Anyway, one of the Special Needs Brethren Mike (he of the website known as Marissa's Bunny in honor of his wee lass Marissa, long-time sufferer of Infantile Spasms and still awaiting a window for possible surgical intervention) certainly has it together when it comes to raising money for his daughter's surgery and for helping out a lot of other kid's too.

He's had his employers on board in the past with some stuff, and they have been stepping up their game of late (in case you don't know that already by reading his blog, which of course, you should be doing anyway.)

Currently, he is giving away 5...that's FIVE iPads to families of kids with Special Needs. This is a Merit-Based contest, and you can find all the details by going to his website, the aforementioned Marissa&#…

Monsters Under the Bed

That was always the one thing that, at least growing up, the concept alone was enough to scare me to death. Just the idea of it was so creepy to me that you know what I used to do when I was in my teens and even into my twenties and yes...even my thirties?

Yer gonna laugh.

No bed frame.

I shit you not. It was such a vivid childhood fear of mine that I carried it into adulthood, and for years...YEARS, I would not use a frame for my bed. In fact, I believe in the apartment that I had right before Jennifer moved in with me I did not have my bed on a frame.

She thought it weird. That particular photo above is not from THAT apartment, it is from several before that, from my graduate school days I believe, but you get the bed frame. And yeah, I had no closet in that room.

I did not explain to Jen when we were dating why I had no bed frame, because I liked having a girlfriend.

I just said I preferred it that way. I liked being lower to the ground or it was better for my back or some b…

Bennett Gets a Historical Shout-Out

Recently I was asked by a new addition to the Special Needs Brethren & Sistren, Summer Robinson, someone who was at least new to MY line of sight, if she could post one of Bennett's Infantile Spasms videos that I keep up on my residentlilly YouTube Channel on her blog during an Awareness Contest that she was running.

She also wanted permission to take some text from Blogzilly and use it for an article about Bennett's Journey.

Her daughter Abby, sadly, suffers not only from Infantile Spasms but many other things, her full story is here, and it is, like all of them, as heartbreaking as you'd expect.

Of course I agreed to her requests, not just because of her story and her daughter, but you know how much awe, respect and love I have for anyone who serves in the military, as both she and her husband do. Anyway, even though this is from a while back, I forgot to post about it because I was jammed up about something personal and forgot to mention it, but her post about Bennett…

And The Poppy Goes To...

Some of you know that I used to be heavy into working in the action figure, toys and collectibles industry. God I miss it. TERRIBLY.

Why am I not still DOING it?

A lot of reasons, not the least of which is being tied to where we live for the time being. Our house is unsellable at the moment without taking a major loss on it, Bennett receives unreal services in the county/state in which he lives, etc., etc.

For some reason known only to those who still do this, there are a select few people who are just marvelously wonderful who have never forgotten me, who are still in the business in some way, still connected to it. This flatters and honors me in a way I cannot describe to you.

As I struggle with all that I have over the past couple of years, these occasional nuggets that come up are so completely nourishing to my soul that they invigorate me and remind me of a time when my life wasn't so consumed by all this other...disability stuff.

Ahhh...the 'good ole days'.

When my life…

Light is Green, Trap is Clean

Sure, Dr. Ray Stanz was saying it to explain to newbie Winston Zeddemore about how to transfer a ghost to the containment grid in Ivan Reitman's classic Ghostbusters, but it is also how I like to say that Bennett's latest MRI results came up positive.

Or is that negative?

Hmmm...lemme think about this.

There wasn't any tumor regrowth. Which, in the medical sense, means the MRI was negative, but it's PRETTY MUFUGGIN' POSITIVE TO ME.

And the right side thing? Yup...still there, and Dr. Bingaman (Super Surgeon) still believes it is an over-read and so does Dr. Lachhwani (Eminent Epileptologist).

My wife reminded me over the phone, when I expressed my questions from yesterday (The 'Are we pursuing this enough?' thing.) that these men are the Dynamic Duo who both saw tumor when no one else did and took quick, decisive action to end his seizures and get the tumor out. If they believed it was causing him harm, don't you think they would attack this thing like i…

MRI or Am I You?

There really is no clever way to work MRI into the title of a blog in less than a few minutes. Maybe if I had some more patience. Or more brainpower.

Coming up short on both right now.

Today Bennett is at the Cleveland Clinic, getting his brain scanned yet again for his 'routine' follow-up Magnetic Resonance Imaging scan to check to see if his brain tumor, the Stage II Oligoastrocytoma that was removed on August 27th, 2009 to stop his Infantile Spasms (and incidentally to keep the boy amongst the living...there is THAT), is starting to grow back in any way.

There is always that collective 'holding of the breath' on this day, wondering what the results will be. Obviously you want more than anything to get the results quickly and you want the results to be 'negative regrowth'.

And as each month passes the chances of regrowth go down, but that does not (as any parent with ANY kid with ANY problem can grok) mean that your fear goes down at the same percentage rates.


My Luck Continues to Improve

Thank you, oh Powers that Rule the Universe. While yes, I am so very grateful that you spare me from Death and Seizures when clearly I do not deserve it, I love the fact that you never cease throwing me curve balls that hit me SQUARE IN THE NUTS as often as you can possibly do so.

Crack...the small, almost imperceptible sound was followed in almost immeasurable fractions of nanoseconds by the pain. Yet another of my teeth in the back had shattered.

This happened to me once before, and I saved a picture.

I called him Fred.

I lost Fred. Had to give him up. He was far too badly damaged to salvage. He go bye-bye. I never quite got over the loss. I still seek him out sometimes with my tongue, looking for solace, and there is just an empty space where Fred used to be.

Sniff. I miss him.

His opposite number, Frank, on the other side, was in better shape. He had some interior damage, but he became the first King of Lilly Mouth by being the first one crowned. He ruled with an That…

Two Years

OK, so it's been two years. That much we all know.

Two years ago today, since Life as We Knew It Changed Forever.

There really isn't a whole lot to say about it that hasn't been said already. I've done quite a lot of writing in the past two years. There is one thing I wanted to make sure I clarified from the last post that I wrote about not feeling any Survivor's Guilt about Bennett's lack of seizures since his surgery.

Actually, a couple of things now that I think about it.

First one is...James, whatever it is you are smoking my friend, can you pass me some? Where in the world did that comment come from? I can only guess, and this is just a guess, that it comes from the fact that you are a single guy who maybe catches bits and pieces of this blog.

It's no big deal really, in fact, it made me smile ear to ear, cause it was such a pleasant reminder not only of how much I missed interacting with you as often as we used to but how much I love your personality and …

Still Ticking

In case any of you missed me.

It's a jumbled mess in there you know.

Inside my head.

February 12th doth fast approacheth. All week long it has been weighing oh so very heavily on my mind. I haven't really had much to write about for weeks because of some of the other things going on, but with that date looming very close, I really have the wind out o' me sails of late.

Two years.

Has it really been only that?

Has it really been that long?

Funny thing, the perception of time, isn't it? An event that occurred in your rear-view mirror can be perceived, simultaneously, as being so ancient that it almost crumbles if you dare to touch it or as fresh as a loaf of bread that was baked so recently it still has warmth to it.

In many ways, Bennett is one of the lucky ones.

SO many kids, so many...even the surgery kids, are still having seizures or are having seizures again after the parents thought the Seizure Dragon had been slain for good. It breaks my heart to hear about it, it rea…

The Answer Was Right in Front of Us...We're Just Crappy Parents

It is WHISPER quiet in the house right now, a Saturday afternoon. Tranquil. Peaceful. Like something out of a beautiful photo.

It's downright CREEPY.

It's almost 2:00 PM as I start clacking away at this. It's been a very uneventful day. No screaming or yelling. No hitting. No biting. No outbursts. Everybody having a pleasant day doing the things they need to do/want to do/enjoy doing.

Today is the second day that we have a new Home Health Aide giving us a hand with Bennett.

So that was it?

We just suck as parents?

Hmmm...had I known the answer was so simple I'd have stopped trying to figure out what the problem was a few weeks ago.

I'm yanking my own chain a little, of course, but there is a SMALL kernel of truth in there, and that is this...the more Bennett is occupied and entertained and stimulated, something that we often fail to do, the better off he is. We don't fail to do it because we suck. I get that. We fail to do it because we're human beings, we both …

Lake Flaccid Iced Over

That's what it feels like when you have no electricity.

You're powerless. And we depend on electricity to enjoy our daily lives, hell to even get things done.

I'm sick of this shitty power grid I live on. I missed the AFC Championship Game for no reason whatsoever. This ice storm? OK, I get it. But still. 4-6 days until power is restored to our house? I am now dangerously close to missing the Super Bowl.

But that's chump considering what else this is costing me overall.

1. The NEW, new Home Health Aide was supposed to come by to meet Bennett. Postponed.

2. Bennett is out of Natural Environment. More Chaos = Less Happiness. Less Happiness = More Stress.

3. More Stress needed like hole in side of head.

4. Did I mention that I make what little livelihood I can FROM MY HOME? I need access to my home to make that chicken scratch.

5. Power loss caused me to miss PSYCHIATRIST APPOINTMENT this morning at 9:15. That and the one-inch thick sheet of ice on my driveway. Me missin…