Thursday, January 22, 2015
Do you ever lay in bed after a particularly difficult day and wonder how the FUCK you made it through the entire thing....and then feel like an asshole because no one was shooting at you, no one had their heart beating in your hands while you attempted to save a life, you didn't spend the afternoon exhausted by attempting to discover the cure for a degenerative disease?
It was just you and your insignificant, mediocre life and the stupid bullshit that you let drag you down into places you have no business being? Anybody? That happen to you?
Just curious...never happens to me, I just wonder what that must be like. ;)
Of course...I do wonder how I am going to feel tomorrow after Bennett's Quarterly Review. No wonder I can't sleep. Why these are scheduled in the early hours of the morning is beyond me. Especially since we schedule them. Not enough time for morning coffee, full routine disruption. End result?
4-5 days of constipation meets Butt. After 6 years of effort and hope meets more brick than clouds. There will be some clouds, a few fluffy ones, but most are thick grey storm clouds that don't leave one with a great deal of hope. We have to find that in other ways.
When I know what those ways are I'll let you know. LOL.
On that note...
Posted by Kenneth Lilly at 2:33 AM
Monday, January 19, 2015
A long time ago, somewhere around 2009 or so, I gave up smoking. I'm no quitter, but I figured, what the Hell, it was time. Especially when my then 3 or so year old son Carter caught me puffing away on a Marlboro Menthol in the garage (I never smoked in the house) and said 'Hey Daddy, when I grow up? I am gonna smoke JUST LIKE YOU!!!'
Yeah, like I don't ride on the Guilt Train enough to have tickets to spare.
So I gave up the sticks, and soon after? Decided to give up Diet Coke, another of the Great Evils of the World that was giving me a problem. I'd stopped with the sugary shit, but the carbonated, caffeine-filled conundrum of that canned concoction had me by the cojones, and I was pounding them by the half-dozen a day or more, while still having the morning coffee, the afternoon espresso, and anything else with caffeine in it.
So that had to go.
After that it was ANYTHING that had Aspartame, Saccharine, Splenda, or anything or an artificial type nature in it. I figured, why in the world did I just spend the time giving up Diet Coke, only to still be consuming Crystal Light, with all of its chemical non-goodness and the who-knows-what-shit that it might have in it and its who-knows-what-effects it might have on me and my aging self?
So got rid of that.
Then I watched this documentary called Forks Over Knives, scared the shit out of me. Of course, what scared me more was a trip to the ER in an ambulance that same year. So I gave up chicken and other meats and started trying to eat a mostly Plant Strong diet. I couldn't go so far as to call myself a pure VEGAN, because of the last few things that remained in my diet, but I was certainly what I liked to call a PROTO-Veganatarian.
I was getting somewhere at least.
If only I could get my severely disabled son to eat the way I want him to. What a huge...HUGE, difference it might make in his everyday. He eats a lot of garbage foods. But I want him to eat and not starve. He is the pickiest being I know, and getting him to eat anything even remotely resembling a vegetable is like no task I have ever tried to accomplish in my life which is, sadly, not very full of accomplishments quite honestly.
It's on my list. So is dairy for me. I have already been able to eliminate dairy milk from my diet, that was easy. Cheese not so much. I still sprinkle that shit on my food from time to time, there is NO cheese substitute on this Earth I know of that acts the way cheese is supposed to behave. If you know of one, clue me in.
Why am I even writing about this today? Just on my mind because everywhere I turn I see MLK, which of course with my crap glasses I see as MILK, and then I start thinking about all things dairy and dietary, and not all of the powerful and wonderful things I am SUPPOSED to be thinking about today. Funny how that works out. Of course, Bennett home today, and bored to boot, that makes for a more tense environment, which also has me thinking about ways to change behaviors. Ala food intake for the lad.
He's eating right now as a matter of fact...and while it isn't the worst thing in the world, it ain't vegetables.
Saturday, January 3, 2015
How's it going? Been a while. Figured I would write. Miss me?
I should look to you more often than I do for answers. What can I say? That's easier said than done. Especially for me. Instead of throwing my sinful ass at your feet I try to look for a loophole and I seek answers on the Internet. Yeah I know...I don't know why I do it either. They aren't easy to find there. More often than not I spend a great deal of time cycling through various links only to come to a sudden and disheartening halt and an inevitable 'Page Not Found'.
That or I find websites that make me a lot less worthy to be carrying on conversations with you. I don't spend TOO much time there.
My spiritual bypassing makes my current emotional predicament much harder than it already is.
And I clearly need the help, because small triggers can put me in a bad place. I remember when I moved into an apartment on my own during my recent separation, I would sometimes, in the afternoon, find myself sitting there doing some work or whatever, having forgotten to turn any lights on as the sun went down until eventually? The whole place would get very dim and grey.
Why this action had the eventual reaction and result of your boy having to choke back tears and snot and trying to keep quiet so my neighbors didn't hear me crying within the echoed walls of the barely furnished abode I cannot say.
I suppose, if I really think it through...is it just a simple matter of me trying to figure out how to let go of those things I had grown accustomed to having in my life that were so important to me. At that time I thought my marriage was finished, and my days of being a father were over.
I don't know. I only know that I experienced dramatic, and I am not exaggerating when I say dramatic, swings of emotion. Unlike any I have known in my life to date. And my life to date? I haven't considered it to be a life free of drama. Thanks for that, by the way.
Nothing prepared me for this. Nothing.
Even after moving back in, there have been and continue to be intense emotional swings, insecurities, hurt feelings, doubt, fear. But there is also hope, joy, laughter, healing, love. It is in totality exhausting.
I think that all young couples should have to undergo a bit of training. Let's call it a Pre-Marital Bliss Class. Not unlike the class I took when I wanted to get to know you, Big Guy...back when I was getting all Catholic and stuff. I understood why I had to do that. And I would totally understand why a class to prepare people for marriage would be a very good thing. And I don't mean like the class in church, I mean something more real, more visceral.
Kind of like a Scared Straight but for people about to make the biggest commitment of their lives.
I wish I knew of some...place. Some space in this world where I could go and be where there was no responsibility. No obligations placed upon me. No expectations. Maybe there is a guide there, either person or thing...some answers for me. Perhaps this guide tells me who I am supposed to be, and why? Maybe he or she or it could toss in a couple of directions, point me toward those things I need to actually be doing. I guess then it would not feel as if I am always rowing a boat with such intense voracity only then realizing that I have been moored to the dock the entire time.
If only such a place existed.
You know of someplace like that? Cause I need it. A place to center my Chakra or balance my chi or my soul or spirit, or as we say in my neck of the woods, just to get my shit together.
Maybe what I'm looking for isn't so much a place, but a state. And I don't mean a state like a State, you know, like North Dakota or something. More like a 'state', as in mental. Though if I were to be looking for a place to get closer to that mental state, I think maybe something that has a bunch of uncomfortable wooden seats might be a good call.
Know what I mean?
What am I saying? Yer the G-Man, of COURSE you know what I mean.
Or, um, in this case...Amen.
Friday, January 2, 2015
Tricky question. And one that was posed on my friend Jerry Macaluso's Facebook page a short while ago. Specifically he said 'Can money buy happiness? Give me more than a yes or no. Explain why your answer using logic and facts.'
Ha. Logic and Facts. Me. Too funny.
I'll just call it like I see it and hope for the best.
And oh yeah...hi. Been a while. More on that later. I'll have to just play slow catch up. And figure out if I still feel like doing this as I go along.
But back to Jerry's question. Money, and by money I mean Shitloads of It Via Quantities of Sickening Numbers, could help set up deterrents that would ease much of the stress that occur in the daily life of our Special Needs House. But all the money in the world won't make Bennett normal again. Ever. That ship sailed.
I could possibly get to a place of feeling a lot happier seeing him get better overall managed care, better resources, better opportunities, which might free me up to create some opportunities for myself and the rest of my family. I see that Monster Money could afford me a chance to maybe repair some damage that has befallen the relationships between me and my wife, Carter and I, and so on and so forth. I know, from the experience of having moved back in to the home after a separation that there is work in these areas that needs to occur that no amount of money will fix in and of itself, money will just assist them, but the truth is that actual work is required and real results can only be achieved from within.
Money makes this Disability Road easier to walk, but it doesn't mean I can't walk it without money. The lack of money just puts a lot of shit in the road that keeps me off of it. Slows progress.
Nutshelling it, money to me is a symptom remover. And we have symptoms in this Special Needs House coming out of our ears. Take some of those symptoms away, we still got ALL the conditions that came with Infantile Spasms, Autism, Brain Surgery, etc., and we still have the problems of any other group or people.
And then there is also this...I could be as rich as Midas, and still beat myself up every day that Bennett says Five when I ask him how old he is, after having just told him Seven just 10 seconds prior. And then a bit later same thing. And again. And again. His cognitive functions were just ripped to shreds. Money helps that some. But unless the funding is limitless in scope I shudder when I think how far we have come in some areas in 5 years and how little in others with some great things for Bennett to take advantage of.
Well, the conclusion, Jerry, is that I guess the money wouldn't buy me happiness. But it could buy me a house that was Bennetized with sinks that were voice activated, doors that were fingerprint ID locked, an on-site behavioral staff in an attached facility, everything he needed to be safe and secure. Then on the flip side an indoor pool and a 24-7 lifeguard, a small slow going roller coaster, lots of Skee Ball and other indoor type games, a basketball hoop, ice rink, and the like. Essentially my own ramped up Chuck E Cheese or Magic Mountain on Crack.
The Money would buy HIM happiness. And Carter too. And that might just make me happy. :)
Sunday, October 26, 2014
WAY back when I started this Sunday thing, I had a follow-up immediately scheduled. I had it so because I knew that I would need it. At the time, there were lots of transitions in Casa de Lilly. I even have (or had, because I just killed that old Blogger Draft), the sentence 'Get used to lots of images and not a lot of words for a while...Trying to figure some things out.'
Because after two months, it remains true. Though I fed the blog with nothing at all to be perfectly clear. No images. Nothing. But the part about trying to figure things out...that remains exactly the same, though my location has altered.
I sit here in a rented condo, living alone, separated from Jennifer, my wife of nearly twelve years who I've known for longer still, as the Dissolution of our marriage looms over the raging seas of my life like the coming of a storm. I will be talking about this in future posts, she is cool with me discussing aspects of it all. I just don't feel up to it today.
The most startling thing to get accustomed to, which is all I want to say at the moment about the separation, is the total and complete sense of human singularity I feel when I am here in this place, and how punctuated it is whenever I think of my two sons and all of the things I have lost over the past several months. Think about any of it too much, and I begin to sink into levels of depression that rival periods in this blog that I never want to go back to.
It's a fight, plain and simple, to stay on a positive course.
But fight I will, because I have to.
Enjoy some pictures, taken over the course of the last two months. Sadly, many of the photos taken of the boys...I did not take myself. They are excellent photos though and I love looking at them. Sorry I have been out of touch. Life has been...a bit on the crazy side.
Until next time...
Sunday, August 31, 2014
I say 'Sorta' because I need to explain what Sorta Silent Sunday will be. In my efforts to continue to build separate and unique, not sure what you call them...compartments, to the blog (and admittedly to finally, after months, to hit double digits in posts within a single month), this is another one of those types of regular things I'd like to try.
Here I'd like to just post some of the photos I've been taking lately, or maybe not even lately but maybe I managed to scan some material in and haven't really done much with it, and not bother with a lot of words. I know...me not writing a lot of words seems rather alien. But like I said...this is me trying to find a new voice for this blog, while still talking about Bennett and his journey and the world that surrounds us.
Maybe new isn't the best term. Maybe refined is...better. Who knows? In any case, I have always tended to do my talking and thinking out loud in this space. This is no different. This round is so Bennett heavy because I am trying to show how FRIGGIN' hard it is to get a shot I like of him in one round of photos...he is a tough little dude to shoot. Carter? He just doesn't cooperate out of sheer will. Bennett doesn't because he doesn't know any better. ;)
Friday, August 29, 2014
So you see some changes happening here. Along the side, along the top. Nothing major yet, just some refinements.
I am slowly trying to turn this ship around. There are so many things left to do. From the back going forward? By that I mean, from Post 1 moving toward today? Going from that point and restoring ALL the broken links to photos that are no longer there.
I was an idiot and did not renew a URL that I should have. Needed the money, or to save it rather, and the hosting had to be cut. Figured I would spend some time relinking or just go back and get the URL, but some asshat bought the URL and like a bitch is squatting on it, wanting to get PAID to let it go. I...don't think so. Pappa don't play that game, son.
It does give me an opportunity to clean up old content in more ways than one. I can prep older posts for the newer feature called Wayback Machine, but I can also go in and maybe tweak some language if I want and re-configure some photos. I recently was reading some stuff about copyright infringement and I...well, let's say I am a bit too liberal in my use of other people's photos here, and that needs to just stop.
I do rely on the photo as a humor tool, so I need to figure out how to do that and still not kill a certain style I have developed, but that's just something I have to overcome. I don't want to start getting contacted by people who would be rightfully upset. It's long overdue.
PLUS, as I was looking over some statistics a few months back, I started looking at what draws people to come here. I really don't know much about keywords, hashtags, any of that shit.
Much to my shock and AW CRAP, I saw that there was one particular phrase or phrases that keeps coming up again and again and again. Believe it or not? Has nothing at ALL to do with butts. I'm not even going to WRITE it, because I don't want to continue drawing these creepy freaks in like moths to school girls. I'll let a couple of non-described screen caps do the talking.
See? And if you mention the words in the comments, I'll delete it. That first one is back in JUNE.
This is almost every time I LOOK in the stats. EVERY TIME! I mean, I've started to get more concerned about things like traffic now that I have decided I want this blog to expand and grow and maybe turn into something that can be used as, I don't even know yet, a springboard to something, I haven't figured that part out...but this is NOT the direction I want it growing. So I need to revise that old post and make sure I am a wee bit more careful about how I describe certain things in the future.
Wednesday, August 27, 2014
I forgot one anniversary this month, nearly forgot two others.
Been under a tremendous amount of stress. And no...not gonna be talking about this particular wave of stress. Gotta ride this one out somewhere other than here.
5 years ago today? Bennett had his head opened up and a tumor cut out. 15 years ago today? The lives of two people would be forever changed. One was mine.
The other? Jennifer, the woman who would one day become the mother of that very same boy. She met me for our very first date in a parking lot of a Meijer store after having encountered me in an online dating service and talking to me on the phone for around three weeks prior. The date moved elsewhere, I suppose that is noteworthy of mentioning. The parking lot was just a place to actually MEET. Neutral territory, as it were.
The rest, as they say, is history.
Welcome to what will be the first of many 'new' segments on this blog. I'm hoping to roll them out over time, and then just integrate them as regular...I don't even know what you call them in the Blogoverse...features maybe? The goal here is to have sustained, repeated content that I can rely on. I want to get this thing cooking in my life again. Been going through a LOT of changes lately, and this is just one small part of it...getting back to doing things that make me happy.
This makes me happy.
Wayback Machine will be revisiting old blogs I have written. They may have been written here, or on other blogs that I used to partake in like Grey Matters, maybe further back like Made in China. Basically I turn back the clock and re-post, but also add in some new commentary or insight into said content.
What once was old is NEW again. Love it. Figured why not? Since I have to go in and fix a SHITLOAD of broken photo links since some asshat stole my old creatusmaximus URL when I forgot to renew it and is squatting on it LIKE A SISSY BITCH and wants money that I am not gonna pay. Otherwise I would just renew the URL, load all the pics in, and everything would be RESTORED. But NOOOOOOOOOOOOOOOO....some turd needs to try and make a few bucks for DOING NOTHING...
I love America and free markets and all that, but squatting on a URL? That's just a shit move.
Now...let's get in the Wayback Machine...
Originally posted on blogzilly: Wednesday, February 11, 2009
Been friends with Jerry Macaluso since 1998, at least that’s the year he reminded me of in a recent note. Those were the early days in what might be considered my entrance into real adulthood. That's a whole nutha story since I was THIRTY at the time. I got started way late. (The career in toys was a fallback career that I was super lucky to get. I failed TOTALLY at breaking into the comic book industry. And I tried HARD. But after two years I had to give it up.)
But in the 98-99 period I began my career in an official way, by getting a job at ReSaurus, and also happened to start dating the woman who would become Mrs. Lilly. Interesting…the two ways we define ourselves, work and family, both getting their first real pushes in the same general period. Probably happens to most people that way. Maybe it is a maturity thing, you end up ready for real responsibility and ready for a relationship. (Interesting that my career and my family would remain so intrinsically linked, and both start to become undone by the other. After Bennett's incident and that Summer of Seizures & Surgery, there was no going back as far as career was concerned. We were bound to Ohio, and it to us. That meant the career would always be taking a back seat to the family.)
Anyway, I bring that up because it was actually Jerry who prompted me to start blogging again. (I did NOT remember that!) He is in charge of a new gig, called Pop Culture Shock Collectibles, which does not have its own website yet I believe, so that's a link to his MySpace page (MySpace...LOL!!! Obviously the link was broken.). In case you don't remember, Jerry was the founder and creative force behind SOTA Toys, a company which he has since sold, but whom I worked with a ton early on at ReSaurus, which is, in the late 90's, where our friendship really bloomed.
Pop Culture Shock isn't doing action figures (sadly), but the product is still as cool as it ever was, they are making 1/4th Scale Mixed Media Statues, from Street Fighter and Darkstalkers. Check out a couple of these bad boys below. (Pssst...I got to actually help on one of them! - I keep no secrets on this stuff NOW...I did a rough sketch concept design for the Cammy statue. It was only marginally good. The sculptor really beefed up what I had done. I recently located that sketch and will post it in the PCS Folder on my Creatus Maximus Facebook page.)
So, he and I talk a lot about Street Fighter, and a week or two ago I showed him some images of an Akuma Mini Bust that was sculpted at ReSaurus, but never got produced. And it was something that was probably never shown around much, because Capcom shut down the deal early, the sculpt was done, frankly, because near the end there wasn't all that much to do.
It might have occurred after I was laid off and gone to Palisades, since ReSaurus stuck around for a year (maybe two) plus after the first round of layoffs.
He suggested I show it, I told him I would, but that meant starting a new blog. What the hell, right? (I started this blog with the intent of it being entirely about toys and collectibles. Remember this was the VERY beginning of 2009. I was still hoping somehow to resurrect my career after Creatus Maximus had failed and there was still a soft option of leaving Ohio. I had NO idea that a couple of weeks after starting the blog that Bennett would start having Infantile Spasms and EVERYTHING would change.)
So here it is...I think Jon Matthews sculpted it, pretty sure Chris or Tony painted it.
Pretty cool huh? Always wished that Akuma had been produced. It was one of my favorite Jon Matthews sculpts.
Fast forward to late 2012...and Jerry contacts me and asks me if I am interested in working for him. I told him I couldn't do it, no way can we move because of Bennett, he has to stay here because of his benefits and a special deal he has worked out with the state - that's complicated. Jerry said it could be from my house, part time, and we'd work out the details later. Just wanted to know if I was in.
You bet your ass I was in!
Tuesday, August 26, 2014
I knew that this day would eventually come. It always does.
That day when you forget to honor someone's memory appropriately and you spend the next couple of weeks beating yourself up on the inside because of it. I have not mentioned the anniversary of Eddie's death on other year's in this blog, but I have always remembered it somewhere. Facebook, internally via some personal thing....SOMEWHERE.
This is the first year I fucking spaced and...did...NOTHING. And what makes me extremely sad and angry is this is the first year I see that on his Facebook page on August 12th? No one wrote anything. Not even me. FUCK FUCK FUCK FUCK FUCK!!!!! I want to cry and scream and break shit over my face.
EDIT: I need to make something very clear, as I saw something unfold on Facebook and I want to be very specific here. My frustrations over Eddie's page are all about me and my own forgetfulness. I know that everyone, especially Eddie's family, but everyone who knew Eddie, honor Eddie's memory in their own way, and my expressions of anger here are directed at me. I'm mad at myself...my statement that no one wrote anything is misdirected. I am angry that I didn't. That's why I want to break stuff over my own face. I consider this my own personal failure. No one else's.
If there is anything I have learned here in the middle chapter in my Book of Life it is this...there is no Book of Life. No real one. There are no manuals, no guidebooks, no PDF's, no top ten lists of any kind that encompass everything that Life is going to throw your particular way.
Everybody is going to have a different experience.
So you do what you can to muddle through the mud and the muck, you do what you can to make the most of the joy and the laughter and hang on to that too, because you never do know how fleeting the good times will be. And they are just that...fleeting. No one tells you that when you are young.
And why would they? Who wants to be the guy who poops in the swimming pool? Not me. OK, maybe me. But not YOU, right?
It seems like, over the past oh, I don't know...let me count it out here...the past 40, maybe 46 years or so...I have spent my whole life making mistakes, and the rest of my life trying to recover from those mistakes. And that, by the way, is not really all that BAD, mind you. I have always believed that it is OK to fail. As long as you learn something from it, and move forward with some new knowledge and build off the fuck-up.
But wow...with the raw quantity of mistakes I keep making, and with that philosophy, one would suppose that I should be the wisest man on the planet, right? Instead, why do I always feel like such a fucking idiot most of the time? :) I guess once I figure that out, I can stop writing in this thing and go home.
No chance of that happening any time soon.
Eddie, brother, I forgot about you. My mind was so wrapped up in Bennett's MRI that I just fucking forgot. I'm sorry...I still have it in my calendar, I still knew it was coming because this year I actually went back to San Diego Comic-Con, the last place I ever saw you in the flesh and got to hug your squeezable self. And yeah, you came up in a LOT of conversations. Especially with Jerry and Steve.
I saw your brother. And I avoided him. I shouldn't have, but I did. I cannot believe what an open wound you still are to me. I can only imagine a teeny tiny infinitesimal FRACTION of how he feels. And yet to talk to him face to face? As much as it might help to heal that wound for me, for him too maybe what the hell do I know? But I am so afraid to do it. Freakin' coward I know.
Sorry about that too. I feel like I let you down, man. In more ways than one. I hope that somewhere, somehow...you can be cool with that eventually. And I hope that somehow...I can get my shit together about it.
By the way...Comic-Con without you? Not the same at all. It would have been weird for a lot of reasons, but not seeing you there? Made things very, very strange. And monumentally sad. You would have dug our booth position, right next to The Walking Dead booth. Of course that didn't help us NOT think of you all weekend. :)
If I still drank, I would have tied one on for you. But I don't. I found a quiet spot one afternoon and drew something for you instead...that's all I could do. Hope you liked it.
That's all I got. Talk to you next year bro...hopefully with my head REMOVED from my ass.