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Showing posts from 2015

Bennett's Fate by the Dying Light of the Dixie Cups

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I question matters of Faith and Spirit with some regularity.

It might surprise some to know that about me, since I don't discuss God much. Other than those few blasphemous swear words I pepper into a conversation. Or using the words "Jesus" or "Christ" in a format where I'm not quoting the man, rather reinforcing some point or emotion totally unrelated.

That MIGHT be on a Sunday. Between the months of September through January for sure!

Otherwise I keep my Faith to myself. And I don't claim this is a good thing. I merely state it as fact. I admire people with steadfast belief systems. Those unshakeable pillars of righteousness that can quote the bible chapter and verse and who do their damnedest to live a life according to those beliefs.

I've talked about some of those people here before. So long ago...back when I used to write. Back when I had some idea of who I was. Where I had been and where I might be headed. I'm more lost now than I hav…

One Month Later...

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What can I say? Shit happens!

The excitement I feel over the picture up top can only be matched by, maybe, the electric sizzle I got last week when I thumb tacked a poster on my bedroom ceiling of Erin Gray as Colonel Wilma Deering. Wait…I meant, when I was a much younger man.

Still, I'm excited about the photo!

Lemme explain.

As an artist most of my life I have lost a lot of actual artwork. I've given lots away, had some stolen, and in fits of emotion even destroyed pieces. My attitude over originals used to make my former boss at Palisades shake his head at me in disappointment.

"I don't know how you can DO that!"

"I dunno…I suppose because if I want more, I'll just make more."

Which was total bullshit, I never did that. Well, rarely.


As I've grown wiser, matuuuured, I see the wisdom in that head shake. Now I cherish the discovery of pieces I didn't have anymore. Like the painting above. Gave it to someone in Grad School. I think. Tha…

Bacon Fat and Duderons

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OK, this pain and insomnia stuff.

It's been around a long time. But for some reason this year it's accelerating. Even though I had said this space was not going to be the Lilly Health Report? I lied. It is. Because for the time being it has consumed a vast percentage of my life. I can't ignore that. I can't sweep it under the rug.

Psychologically I feel compelled to keep it to myself because of my late Gramma Ina. I did love her, so please don't misunderstand what I am about to disclose. First of all, it isn't necessarily polite to speak ill of the deceased. Unless they were assholes. She wasn't, FYI. But I have to take care because this particular deceased's daughter, that would be my Ma, reads the words contained herein.

With some regularity.

So I gotsta tread...lightly. You understand.


Gramma could cook circles around everybody. EVERYBODY. Including my Ma, and my Ma would admit that freely. But eventually as with all things that changed, and my Ma…

Cooking and the Dude Mentality

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This is what you might call virgin territory for me. Maybe not virgin, definitely inexperienced. This is where I get super scared about sharing. Not my area of skill.

But you gotta start, to get to someplace cool. Truthfully I started down this road a couple of years ago. Remember those few posts about food and Vegan stuff a and how great it was? I stayed on the path KINDA, I just veered off a bit. Well I'm on it to stay now, armed with new info, guidance and practical motivation.

If things don't change frankly my quality of life is going to continue to go into the crappah. Can't have that.

I've been stalking the food ideas of people on Pinterest and Instagram, making new friends, learning new things and hopefully getting a clue about how to live a healthier existence. I marvel, stand back in sheer awe at what some folks make to eat that is 100% natural and good for them but looks freaking AMAZING.

This THING I put together for lunch? Nuthin special. Steamed brown …

There Is No Spoon

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Or maybe there is.

This is supposed to be happy picture right?

It isn't.

We've been trying to help Bennett's behaviors, the problematic ones, through modification.

Today we were following a schedule, it's fairly new for Bennett at home but he seems to enjoy it. I'd always believed he was OK with things more loose after working so hard all day but now I can't even remember why I thought that made sense. Maybe because of the whole "Square Peg, Round Kid" thing from a couple of blogs back...my reluctance, common among my gender, to accept the circumstances as they were.

There were always the meltdowns since the surgery. The aggression, the scratching, the biting, the hitting, throwing, the abuse of himself, that's the worst. I never attributed them as much to the Autism as I did to the fact that almost half his brain was gone. I'm trying to find a balance, I have been all this time.

I'll tell you, there are days, like today, I don't …

The Mirror Universe is Closed Today

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That means even though I have a goatee which generally insinuates negative, or I am already what my evil twin would look like in Star Trek's alternate reality, I'm supposed to keep that mm-hmm good stuff flowing and be sure the door to that Universe stays shut.

It's gotta be that way, right? Yeah? Pause for reassurance…wait, this isn't a conversation. It's written word. Sometimes the voices in my head are a pain in the butt.

Yeah, it's shut, though maintaining Maximus Positivicus isn't easy while writhing in agony. Which I am, and that's no joke. Tonight I had tears in my eyes over it. Bennett, bless him, actually came over to me and patted me and said "OK, Dadda, OK".  I did say I would try to steer away from The Lilly Health Reports, but I will go there long enough to tell you that it takes me an unusually long time to get these posts done because of the intensity of the pain, inability to sit or stand for extended periods in one position, …

The One-Percent Solution

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Whenever I find myself in the midst of a disability maelstrom, it's not uncommon for me to lose my way.

Of late my attitude in regards to coming back into the family's everyday after being separated has been positive but it clings to those puppy dogs and lollipops with duct tape, Super 77 and Velcro. Tenuous is a good word choice for everyday happenings.

Unsettled.

No way to see beyond the stormy horizon.

Not because I don't want to see a bright beach with crystal waters to sail into. Rather the sea is in a state of such unrest the waves obscure what lies ahead.

Oh shit.

Lilly's pulling out his sailing ship analogies again. What happened?

There is a reality that started to come into focus for me. About my life. Carter. Jen. Bennett. Of course Bennett will always be at the epicenter of what can only be described as a jarring set of unknowns, unsettling problems that some days appear fixable and other days...do not.

What must it be like to be at sea and become …

Get Past the Zombie Sharks? You Might Meet Great People

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I've been thinking about Special Needs Dads a lot lately. Couple weeks ago, had an experience with a very cool dude...wait that came out TOTALLY wrong...um I didn't mean came out...why don't I just move on?

So this guy, for the sake of argument let's call him, oh, Aaron or something, from Australia flew in to town to talk about Bennett and life as a Special Needs Dad as research for his doctorate dissertation in Social Anthropology. Technically he flew in from Arizona. But he flew in from Australia before that. And yes...his arms were tired.

The visit was anything but.

Wrapping my head around the whole event has been a struggle. Partially because I am exhausted today, but also because I don't know what I want to say about it. I struggle with an even more puzzling truth. Maybe I have very little to say about it at all.

Yes of course I will explain. It was simple. Complete. Like the perfect one-hour episode of a great cable dramatic comedy.

Subjects were brought up …

The Apple

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Today I was updating a folder on my Facebook page.

Been doing that a lot lately. Instagram. Flickr. Facebook. Just trying to get modernized. I'm not sure if it is good for me or bad for me. It takes some time, but some of the stuff has been worth it. It never hurts to expand your networks, and I never have fully understood Social Media. I'll need to figure it out here, particularly if I intend to continue with this space.

The photo up top is part of one of the folders I started a while back. A revisit and rebuild of photos of my Dad. A friend of mine from grad school commented that I really do look like my father. She isn't the only one who thinks so. Many people do.


I suppose it's OK to look like him, as long as I don't mimic his health destiny. He died young. Large man. Since last September when I took the Selfie that I use for all my Internet avatars I have put on 16 pounds. SIXTEEN. And the bulk of that has been since February/March when it really started to …

The Man Who Mistook His Back for a Knife

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Long before Bennett ever had issues with his brain, and long before the world ever even knew there was such a person as Oliver Sacks (thanks to a really great performance in a good film adapted from an even greater book), I was reading about neurology and psychology simply because I found it interesting.

Maybe part of it had something to do with the dual relationship I had with my own brain. Notice I use the term had as if to suggest this is a thing of the past. I'm so clever. My brain was my greatest ally, in that it saved me time and again, I believe, from fates that sometimes befall those in similar circumstances growing up.

On the other hand, or hemisphere, as it were, it also failed me because it never was a truly healthy piece of equipment. I've had some kind of depressive disorder all my life, and well that just plain sucks ze donkey balls.

Because of that I'll never fully trust my brain. It let me down.

Oh sure, I can beat on it Han Solo style and it can sometimes…

Something New

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Sometimes I just get sick of looking at the desert that is this forgotten blog. So I figured I would throw some new photos of the boys at it. Needed a refresh. Especially after the last post, with the large word balloon which, happily, we've moved past.

Another problem solved in Casa de Lilly. Only 749,347 to go.





That's it.

PEACE.

F*cking Sh*t!

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In addition to mastering a few new phrases, the identification of the letters A, D, C & D by looking at them and being able to ID a few emotions by picking out some photographs, major milestones for a kid with the issues my son Bennett has, he has also managed to add the words SHIT, FUCKER and BULLSHIT to his growing vocabulary.

Hallelujah.

Thanks God, for that one. Been fun.

He is a mere 7.5 years old, and I will pause for a moment while you ponder the fact that he is seven and is identifying A, B, C & D only...yeah, it's great and it sucks at the same time. But today? I'm gonna go with GREAT. I'm happy about it. Only 22 more letters to go. SHIT YEAH!!!

Oh, and  lest you think he picked up those naughty words from me. He did not. At least, I don't think he did. I know for sure where he got 2 of them. The other one? MAYBE he overheard me saying it, but the jury is still out on it. I don't swear in front of the kids as a general rule. I don't express a…

The High Cost of Freedom

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Bennett's behavior.

How many times in how many posts have I typed those two words together? How many times have I reported that the behaviors were on the upswing? That we were experiencing some great advances because of this new X or that new Y?

Not often to my recollection. But then again...I'm the glass half full of shit guy, remember?

Still I did go back and check. Despite the fact that this blog is so decimated by broken picture links and long gaps of nothingnesses, not to mention it really has an issue with finding a true direction (and audience, probably because of that direction and nothingness thing) Bennett's tendency to go from Banner to Hulk has been going on since a short time after his brain surgery.

Before that? He didn't have these problems.

Granted, he was having these fucking horrible seizures in the background of his head 24-7, and then when the seizures could not be contained anymore, his brain couldn't take it and he would suddenly start to jac…

Dragonslapper

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I have quite a few unfinished, unpublished blog posts. They are beginning to stack. Some are so old I probably can't even use the material inside anymore. I start more blog posts than you can imagine, but something always seems to come up that has to take precedence over finishing them. A few dozen written in the Drafts section of Outlook, incomplete. I don't know how many in Notes on the iPad. Exactly 21, though 20 after I finish this one, in the Blogger Drafts.

I type away, often hovering over the bright orange candy-like Publish button. Rather than press it and get the cookie, I favor the dull, grey Save button and go do...whatever it is people like me do.

People like me.

By this I mean people who battle things like Depression, PTSD or Anxiety. These...I don't know...I suppose you call them disorders, illnesses, I dunno WTF. It would be more proper to only speak about myself in a matter as...delicate as this one. For me? I call it a mental illness. What does that m…