Friday, December 30, 2011

Mice. Men. Doesn't Really Matter Does It?

They are still the best laid plans and they always seem to go awry don't they?

John Lennon was definitely not a stupid man. At all. I'll get back to that.

My plans for so many things got blown to Hell and gone this week. The stomach virus I caught earlier kept me from writing about how I took a 3-9 Fantasy Football team from last place to a Super Bowl Championship. A fascinating Cinderella story.

Sorry, Elizabeth and Claire, I know you are both deeply, deeply disappointed.

I was not able to write what I wanted about my 9th Anniversary to my wife Jennifer, which was on Tuesday the 27th, and since she had the same virus, we did not even celebrate it.

Sadly, we do not have a Love Toilet.

In fact, right before the graphics card on my computer crapped out, so to speak, I was working on something for her that was SUPER cool for the occasion. Had to stop because I could not do it on my laptop. Needed the desktop power and the monitor capabilities.

I got so behind because of the virus and then our Home Health Aide's mom had to go to the hospital for 2 days with pneumonia so Crystal was out and I had to watch the kids for 2 days (one of which Jen and I sort of tag-teamed cause we were both on Day 2 of the virus) so I got even MORE behind on blogging stuff. So the 'Best Of' thing I was trying to finish for 2011?'s fifty/fifty now, at best.

In fact, all month long, all this winter even, delays and sidetracking have plagued me, the PLAGUE. I was SO CLOSE to finishing the year with my 500th post. How frakkin' COOL would that have been? Instead, it's going to be ending with either Post #494 or #495 or something.

Well, I guess it gives me something RIGHT OUT OF THE GATE to look forward to in 2012, right?

Of course, there was also my Mom's thing that I got denied on. That was also just before the computer took a dooky and stopped me from finishing something for my Mom's Christmas gift that I was working on in Photoshop. Again...laptop limitations meant I could not finish it.

These days, I have to really think about what I get my Mom as gifts, because she pretty much has whatever she wants or needs, and she just doesn't like to have as much 'stuff' as she used to. She's streamlined a lot of the junk in her life right out the door.

So when it comes to giving, it either has to be something impersonal, like a gift card or something of that sort, or I need to go the consumables or perishables route. Typically, I like to reserve consumables for Mother's Day, the birthday, stuff like that, but even that is a little tougher because she likes to have a tighter control over the stuff she eats.

Thankfully they ship some damn nice fresh fruit nowadays. Of course, there are always flowers. That's always a decent standby, but to me, flowers are sort of a last resort.

There is some difficulty in settling in on what road to go down when it comes to Momgifts, especially if I want to express anything sentimental, because, like I said, she is trying to not hold on to so much 'crap'. Making a piece of art is not an option so much anymore either, since a lot of the art I have given her has found its way back to me since she got her diagnosis.

She wants to make sure it ends up with me in case...well, in case.

It may seem strange to talk about 'The Diagnosis', since I haven't in a really, really long time, and I don't bring it up much in these pages, but that's only because you gotta know something about my Mom. Ever since she found out, ever since I found out, the simple fact of the matter is that my Mom has exceptional reaction.

She has been one of the most upbeat, positive, uplifting people I have ever seen.

Rather than folding like a lawn chair, she is living her life as if nothing has changed, but also as if everything has changed. I'm not quite sure how to explain what that means, I know it might not make a lot of sense to most people. But that postivity rubs off on people, and on me, and so we don't dwell in it.

And that is a good thing.

Wish I could offer a better explanation than that. It get it, but I am seeing it, experiencing it. But as is the case when I am so vested emotionally in something, I find I can't quite express what I am trying to the way I want the most.

I'm proud of her.

Yeah, sometimes she drives me nuts, as I do her, because she can be stubborn about some things, but at the end of the day? I admire her cajones, her chutzpah, but not as the word is used in the traditional Yiddish in regards to insolence, rather along the lines of how it has morphed into a reference to 'intestinal fortitude'.

So the smaller, more manageable gift for Mom sits on my desktop hard drive, inaccessible to me, and as Time keeps ticking by, and the Graphics Card is still not going to be here until sometime next week, AND since my Mom is hip deep in an entirely different struggle with another member of our family in the hospital that I am not certain she wants me writing all the details about, I figured I would try to reach out some way in the digital world.

So I started loading a bunch of photos into Facebook of Christmas memories gone by for her to enjoy, and Thanksgivings, too. I've peppered some of them through this post. As the NYE weekend progresses I'll insert as many more as I can get retouched and uploaded. I can't scan any of the ones in 'The Stack', because the Espon Scanner Driver won't load into the Laptop (fuggin' VISTA), just the printer driver. So I'm going with stuff I already have in the Laptop.

I know it isn't ideal, Mom, but maybe, through your own Laptop, you can peruse some pictures while you are in the waiting room or in the hospital room itself, remember some good times long gone, and look forward to more memories that are still out there, yet to be created.

The other gift I was working on?

I'll save it for next Christmas. And in the meantime, just take care of yourself, pat yourself on the back, and remember you raised a pretty good son, warts and all. ;)

Out on the ocean sailing away
I can hardly wait
To see you come of age.
But I guess we'll both just have to be patient
'Cause it's a long way to go.
A hard row to hoe
Yes it's a long way to go.
But in the meantime

Before you cross the street
Take my hand.
Life is what happens to you
While you're busy making other plans.

Before you go to sleep
Say a little prayer.
Every day in every way
It's getting better and better.

Beautiful, beautiful, beautiful
Beautiful boy.

-John Lennon

Hang in there, Mom. Merry Christmas.


Thursday, December 29, 2011

The Side Dish Drama Continues

When will this family/disabled child blog actually return to its roots? Soon I promise!!! Probably should, too, as the readership continues to plummet. Oh well, waddya gonna do? I write this for a few key people that I picture in my head, and always have. And for me, too, and the preservation of my melon.

Anyone else that gets anything out of it is an extra blessing. Would I love it if it was more popular? Yeah, sure, I'm still a HUMAN BEING (at least...I think I am...sometimes) and I know ways I could get it more exposed. But I gotta balance my priorities I suppose.

I do have some Bennett-related stuff I want to get to, but I am still dealing with my friggin' computer, not to mention a nasty post Christmas stomach virus for the past two days. least I didn't go the 'Yule Log' route this post was originally headed. Even I have my limits.

You can thank me later.

As far as the computer goes, as it turns out, it was not a Fried Monitor at all.

It was Fried Graphics Card.

I tried a bit of an experiment at the suggestion of Dr. McCoy. Not THAT one...though that would be super cool, I'm talking about the computer physician who gives the medicine to all my computer stuff all the way from the East Coast, my good buddy Chad.

I plugged the monitor in to Jen’s desktop. For 2 days it worked like a charm. Not a problem at all.

So I opened up my machine.

Wow. It was OH so very dusty. I looked at the graphics card. I never knew it even HAD a fan. When I sprayed in there with one of those compressed air can thingies, the shit that came out?

HOLY GOD. It was like a terrorist attack.

Anyway, even after cleaning it really well, the fan would not turn at all with air blowing on it. With my finger, the fan was hard to turn at all. I was pretty sure that what was happening was that the card was overheating. It was a reasonable explanation for the behavior, since the monitor would work for a time, then I would have to shut down for a while, then boot up later when the computer was cold, then it might work a day or so later, and as long as I never let the computer heat up too much.

This hypothesis was confirmed by another computer genius, my bro-in-law Eric, who took the graphics card out at our Christmas Party on Monday and removed the fan and confirmed that it was, in fact, and he used technical computer-speak jargon I had a little bit of difficulty understanding, 'Fucked'.

So Chad helped me pick out a new Graphics Card and it was ordered and it is on the way, and it will have to suffice for the time being because a full computer replacement, sorely needed on that 2005 fossil, just isn't in the budget right now. Won't be for a LONG time.

But hey? Could have been a HELLUVA lot worse, yeah?



Friday, December 23, 2011

The Perfect Side Dish Is?

What is the perfect side dish for Fried Monitor?

Well, in case you are planning a dinner party and are serving a feast that is featuring such a delicacy, I have discovered the answer!

And lest you think there this is any sort of inspiration from Elizabeth's blog, 'TIS NOT! Here there not be cakes or pies or other amazingly tasty treats. Sorry, but you'll have to seek those and other candy-coated shells of a moon at her site.

And lest you think this is any sort of inspiration derived from Claire's blog, 'TIS NOT! Here there not be oodles of coffee porn, with images of luscious latte's and captivating cappuccino. She's got plenty of those items if that's yer fancy.


Here you get none of those delights, here you get a side dish of Dead Battery to go with your Fried Monitor. Perhaps you were expecting something a little more...cheerful?


OK, so MAYBE I've evolved slightly past Neanderthal over the past, oh...year or so, to where I am a bit more positive about this thing called Life and stuff, but it is still me, and I can get worn down, and it did not help to wake up this morning to a suddenly bleeding mole that is painful as all get out, searing pain up my back from ripping something in my right shoulder while I slept, and the now-dead battery in my wife's car.

Just hasn't been my week.

The fact that both kids are home all day, WITH me, for the next couple weeks?

Joy to the WORLD!

It's not so bad, actually.

Especially now, that I got it all off my chest. I feel better already, in fact.

Because simply put, when you have some help, everything is different.

My wife helped me get some ointment on my back and that helped with some of the immediate pain of the torn muscle. As the day progresses, Ibuprofen is helping with the tear as much as it can. I have the ability to control what I do and do not do as far as physical work force on my back.

Jen's father came by this afternoon and helped with going up to the auto parts store and HE was the one who essentially installed the new battery into Jen's car since Jen took mine to her office. Yeah, it was another monetary expense we don't need this month...but that is out of my hands. Shit? It do happen. Could have been worse. The battery could have died while she was AT her office. Or in traffic.

Crystal, the Home Health Aide who is still with us, is working days and not nights, and it is a tremendous, TREMENDOUS help, and I never say that enough. I mean, I do to her, just not to everybody else.

The mole? Well...that I'll have to just get checked out. Scary, but nothing I can do about that right now, but I don't need to worry about what is not right in front of me.

What is right in front of me? My two kids. Together. Getting on my nerves a little bit, but a lot of the time it is an absolute joy to see them as much as I do. I tend to treasure these experiences more than I used to. Bennett is...blowing my mind in ways I never dreamed. He's not writing any dissertations or anything. But he is peeing and pooping on the potty with some degree of regularity now.

I have no idea how we are communicating that he has to go. But we are. It is the same word for any 'voiding'. He just says 'Poppy' now. We take him on our own sometimes, but he lets us know as well. He has not really had a Number 2 accident in weeks. Number 1 hasn't been a huge problem either. He is wearing that extra thick underwear. He wears diapers to bed, but 6 out of 7 days he wakes up dry.

That is HUGE. HUGE.

I guess the truth is, that even though I try to say that things aren't all that different for me, inside my head, they really are. Especially when it comes to how I am managing my outlook when things go wrong. I count my blessings. A lot more than I used to. And that means something.

No, that means everything.

At least to me.


Wednesday, December 21, 2011

What's a Good Side Dish for Fried Monitor?

Never fails does it?

You get all excited because you know that TIS THE SEASON. You know that some extra cash is going to be coming in. Gift cards, the green stuff itself, and you know that you'll probably have a little extra dough to play with this month because...well, it is just that time of year.

And there has been a little issue regarding the TV that we had been trying to solve for a while.

Now I know some people have a TV in every room, even in the crapper. We aren't those people. I also know that there are people who have only one TV, or who have a TV that is a piece of junk, and who would give their left one to have a TV like the one we have. So I do appreciate what we've got.

And we have a MONSTER.

Now, the MONSTER was purchased back when we weren't in the position we are in now. Jen had a different job, one that was...well, let's just say better. I had a...well, let's just say a future that was more...promising. We paid cash for it, AND we got it as the prices were coming down on these things, too.

We have two other TV's. Both are the older style tube televisions. A larger one is upstairs in my office, connected to the only other connection to the dish, but it is one of those enlarged bubble screens and it takes a small team of personnel to move the sucker, even though by measurement standards it isn't THAT big anymore. 30" or 32" or something.

A smaller one is in the kid's playroom, not connected to anything other than a DVD player, where Bennett watches ONLY The Wiggles DVD's. The boy will watch nothing else. least he is WATCHING something now. Only took 4 years. He used to never even look at the TV. But now...hey, Jeff, Murray, Anthony and Greg. Well, sometimes Greg. Now Sam. Poor Greg. But like I least Bennett is watching The Wiggles and I couldn't be happier.

Both TV's are pretty old.

OK, they're not THAT old.

So what was the problem?

Twofold. We wanted to get Carter a place to watch TV that WASN'T my office because...well, he's a 7-year old kid who like to go through all my stuff. Can't get him to NOT do that. So he's constantly getting into trouble. Gotta get him out of there. Having him watch TV on the MONSTER is OK...but I also like to play games (though less of them after Operation: UnPlugged).

So we planned to get a new TV since they aren't THAT pricey for a smaller size that we could slide into my office, get a team to move the incredibly heavy TV down here somewhere and maybe have it as a back-up and then shift Carter to the MONSTER and me and my X-Box to the office.

That was The Plan anyway.

Until Friday afternoon, when my computer monitor went nutty and fried itself into peaceful oblivion. I write this from my laptop. Murder on my Ulnar, but waddya gonna do? Don't have anything to plug into the desktop right now. So the writing has to be done on this little guy for the time being, and any fundages planned for that television shift will have to be diverted to a new Monitor.

Tis the SEASON. know the rest.


Friday, December 16, 2011

I Think I'm Gonna Hurl

This week has been full of surprises.

And not just of the kind that have been spawned by keeping my head OUT of the world of X-Box Live. Though it has certainly helped to spend more time with the family, don't get me wrong, and I have made some amazing strides in getting to some things that have been languishing of late, and not just me in the role of 'Daddy'.

For example, dealing with the giant piles of junk in the basement that ALL got shifted around when our house started falling apart. Started making a dent in that the other night. Trying to get all that moved, organized, settled. Found a few things I thought we'd lost or misplaced. That's always nice.

Too bad it wasn't a wad of cash, and I'll tell you why.

Because right now, a wad of cash might quell my urge to vomit.

See, over at Mission: iPossible!, we ran an iPad giveaway over the past two weeks right? Well, at first I was like...hmm...I really screwed up here, because since I have been in La-La Land for a couple of months and not given this organization what I should have, and lots of other things in my Life, it is NOT getting the attention it really could be. SO there were not a lot of entries for the 2 iPads that Heather had managed to procure through donation.

But THEN...something very, very weird happened.

Deadline came for the contest. Had to randomly generate the 2 Recipients from a list of 22 Applicants. Well, first I had to actually disqualify one of the entries because of a problem with meeting the entry requirements. That by itself made me very, very woozy.

But then having to actually put down, in writing, and say to 20 other people that their kids are NOT getting iPads, when we spent the tail end of the summer telling 20 kids they WERE getting iPads? My hands, literally, were shaking and I felt like I was gonna puke.

20 got them. 20 didn't. I did not care for that little slice of numerical irony one damn bit.

It was tougher than I imagined it might be. So much so that I even questioned whether I ever wanted to do anything like it again. For a nanosecond. Then I wanted to start planning out parameters for a third Mission as soon as time permits.

I have to stay determined and stay focused and get some more folks involved.

But most importantly? I gotta remember...stay POSITIVE.

For me? Not the easiest of tasks. But not impossible either. I will simply have to put forth some effort. But I can manage it. Hey...if I can give up my X-Box controllers for a week I think I can manage it. And I never even mentioned in the blog (was too busy playing X-Box, 'NATCH) that two weeks ago yesterday was my THREE YEAR ANNIVERSARY from having smoked my last cigarette. Ever.

So yeah...there are SOME things I can accomplish when I try.

Sure, I could choose to dwell on the 20/20 numerical thing...OR, I could look at it this way. The numbers equating to each other don't really mean DIDDLY DOO-DOO. That's a technical term.

What matters, what REALLY matters, is number of lives changed.


And that number keeps growing.


As long as I keep that juicy piece of info at the forefront of my simian-like pea-sized brain, I ought to do OK, don'tcha think?


Wednesday, December 14, 2011

An iPad Question (or 2) Answered

Day Two of Operation: UnPlugged went well. I did not implode. That older boy of mine is smart as a WHIP. He can spell like crazy. I was blown away again sitting with him and his homework.

Tuesday nights are 'Bennett Stays at Grandparents Night' so it was just the three of us, and with me being emotionally available for a change, it was actually a little better all the way around. Carter enjoyed it. A lot. I really didn't realize what an absentee Father I had been of late to him.

He's such a great kid.

I'm going to introduce 'Daturday' each month to him after this weekend (we have a Christmas party). It is a new idea I have been toying with when it comes to trying to spend more time with him since he always gets the shaft because of Bennett's disability.

It involves him, me, and one Saturday a month where we do something super cool and utterly different. Since we don't do the breakfasts anymore since he doesn't do the Day Care thing, we should try something new, and up the ante.

But that's not the subject of today's blog. Over at Mission: iPossible, we're still running that giveaway on 2 iPads. It ends tomorrow. I was, and still am, surprised at how few entries there are. I blame myself completely. This Fall, like everything else, I let a lot of things slide, including that.

But if nothing else, I do not shirk responsibility. I let my community down by not giving it the time I should have, and it shows in the end result of what you are seeing unfold. All I can do moving forward is renew my commitment to it. Find the right balance between my family, my community, and me.

It's out there somewhere.

In the entry section of that blog post was a question. I didn't want to post the answer in the Comments, because the answer would be too damn long. I didn't want to create a new post there, because I still want the Entry Page to be the first thing people see when they go there until we start the randomized drawing when the deadline hits.

So figured I would answer it here, and link back. Sometimes it helps to have two pieces of Internet real estate.

The question came from Laura, which was:

This has to be the perfect place for my questions :-). I hear a lot about parents of special needs children wanting an iPad for their children to enhance learning and communication. I myself have a daughter with Down syndrome but as I don't have an iPad or iPhone I am curious as to what exactly the device offers. In what ways can it enhance speech articulation and language? Is there a monthly fee to use an iPad the way there is on an iPhone? Are applications expensive? Thank you very much to anyone able to answer for me. All the best to the entrants and providers! Laura

And so is your answer, hope you were able to find your way over here to get it.

Your question is fairly vast. I'm not sure I can answer it very WELL, but I will give it my best shot. I will preface it by saying one thing I have learned from this experience is every child is different, so one's mileage from The iPad Experience varies.

That being said, it never hurts to investigate ANY option for communicating with your kid, if you can get access to it, right?

Let’s break down the question.

I am curious as to what exactly the device offers. In what ways can it enhance speech articulation and language?

A lot. In fact, as far as applications go, the sky is the limit as far as possibilities. There are some that are simple, some that are very intricate. Some that will just help with getting a child to integrate with the device, ala making cool lines and images on screen, others that offer really intense learning. All depends on where you and your child are in the process of development. And like I said, it does vary.

Example, one of the Recipients from Mission One was farther ahead in development, though still delayed mind you, I’m not sugar coating anything here, but she, with this technology, zipped through learning ABC’s in a matter of days. And she struggled with it previously.

Another of the Recipients was in a whole different ballpark. His delays are a bit more on the severe side, so while he isn’t really using the iPad yet for any kind of sophisticated learning, it is providing something for him...INTERACTION. Something that, due to his disability, he had not been able to do previously in a fun way with anything.

One of his parents wrote about how overjoyed he was by this because for years he had never seen his son even PLAY with a toy because of his disability, and for the first time his son was interacting with something and HAVING FUN. It was monumental in his life. For both of them I think. So while each experience was very, very different, the one thing that binds them both is opportunity for growth, for change.

And there is one reason for this, and I am no expert, but my understanding is this…it is because of the touch-screen technology.

There is some…blockage, some mental barrier that makes it difficult for any mind, particularly one that struggles with disability, to make a connection between what is seen on a monitor and the manipulation of a mouse and a keyboard. Again, this is just my basic understanding, I am by no means an expert, I am just learning myself, although I may actually do an about face and start studying this kind of thing more if you can believe it, because I may want to start doing Speech Therapy now that I am going to have to switch careers.

Anyway…the Touch Screen eliminates this barrier, and for some reason, it makes sense to the human brain, and especially to one that struggles with disability. And why wouldn’t it? You point. Your finger moves this. Your finger moves that.

It seems a reasonable explanation to me.

Is there a monthly fee to use an iPad the way there is on an iPhone?

Not necessarily. But it depends on how you intend to use it. There are options with an iPad, but not on the iPads that we are giving away on the Mission: iPossible! website. The ones we give away do NOT have 3G capability. They only have Wi-Fi capability.

I hope I am not insulting your intelligence by over-simplifying the explanation, but I will break it down for those not in the know. Wi-Fi essentially means this. You have your iPad. You are sitting in a Coffee Shop or your Home and a Wireless Network is being used. If you have a password to that network you can access the Internet. That’s Wi-Fi. It means a router is somewhere nearby that your machine will jack into wirelessly, but the ROUTER is accessing satellites in space or nearby towers that are.

This carries with it no monthly fee. Nice, right?

3G is when the iPad itself is acting as the router and IT is accessing the satellite in space or the towers, and you can be sitting in a park or at the football game or at Grandma’s House (who has a black and white TV and no Internet OR cable) or in the car and access the Internet anytime, anywhere. Essentially, it is a gigantic cell phone that you probably can even use to talk on (via Skype I’ll bet).

This carries with it a monthly fee, just like a cell phone does.

But those kinds of iPads are not the kind of iPads we are giving out. We are only giving out the Wi-Fi versions.

Are applications expensive?

Some are dirt cheap and some are absolutely free.

Some are very, very pricey.

There are some websites that specialize in applications for Special Needs. I know of one, called Apps for Children with Special Needs, and there is another good one as well but the name escapes me right now, I am sure there is a parent here who can chime in with the web address.

Again, mileage varies on apps. You don’t need to go with Prolque2Go, the expensive ‘gold standard’ in communication right now, right away, you can ease into apps as you familiarize yourself and your child with the device and find out what works and does not work for you.

And, I do know that the A4CWSN site often runs free specials on apps, and is you join Facebook groups and clubs people are always announcing specials and sales. Community is everything when it comes to this stuff. People are always helping people.

One such Facebook group is called Buddy Cruise, a Non-Profit organization where the parents of Joseph, another one of the Mission One Recipients, are involved. Pamela, Joseph's Mom, just let me know about an Apps giveaway day that their Facebook page will be hosting that is, I believe, in partnership with Gary James A4CWSN site (you'll have to correct me if I have that wrong, Pamela) on December 23rd, all day.

So that's ANOTHER resource to join up with and be a part of.

And the Bloggers are always sharing.

I know Danielle blogs ALL THE TIME about Apps she is using with her son Trevor on Happy Being Trevy, and that’s just the one that sprang to mind first...there are many, many more...and all it takes is spending an afternoon web surfing to find source after source after source.

You keep what you like, drop what you don’t, and you find your niche. Sorta like Life.

Hope that answers your questions. Probably TMI, but hey...that's me, in case you hadn't figured that part out by now. :)


Tuesday, December 13, 2011


Sometime in the Fall, I can't remember how or when, I started to feel like a big steaming pile of...yeah, do I need to say it?

And ever since, this blog has suffered...oh my has it suffered. It has limped along, getting weaker by the day, losing followers, losing readership. Every so often I give it an in injection of...something, but it is like being a bad partner in a relationship.

I'm never giving it enough. And I know it.

Here's the real rub.

Thing's haven't been totally horrible. I mean, the same crap exists now that has existed for awhile, the same junk that has been mind-trippin' me for months. But things, from a day-to-day kind of perspective, didn't suddenly take a nose dive or anything. At least...I didn't think they did.

So why did I plug myself back into my X-Box like I did back when things really were VERY bad? Is it as simple as just being addicted? Or is the answer more complicated?

Dunno. It is usually the latter. Why does it always have to be the latter, huh?

Damn latters.

Some have argued, and by some I mean some friends of mine, the very few I have left, that I actually DO have a lot on my plate that is troubling me, that things are still kind of bad I'm just not seeing things as badly on a conscious level, but my SUB-conscious mind is, and so my retreat to fictitious worlds like Pandora or Gotham City or other such digital domains makes perfect sense.

But that kind of retreat can become so destructive for me, and can be such a powerful pull, like drugs or booze for some people, especially when I make a decision, conscious or otherwise, to face the obstacles in those places with much more regularity and voracity than I do those in my regular, everyday, real life.

So I made a DIFFERENT kind of decision late last week that I needed to do something a little...drastic.

Yesterday morning, I gave The Twins (my two X-Box controllers) to my wife for safekeeping and had her take them to work. For one week, they will be out of my hands. For one week, I am unplugging myself from The Matrix and eating that shitty white paste and wearing ripped up sweaters instead of wearing black latex and sunglasses and doing bad-ass karate and jujitsu moves on Agent Smith.

But it has to be this way.

Because as attractive as The Matrix is, it is still and always will be...The Matrix.

My future still waits for me, no matter how often I choose to avoid it. And holy crap do I choose to avoid it often. But it is fear, kids, plain and simple. You have this mountain of SHIT standing in front of you, and it keeps getting bigger not smaller, and your first instinct is not to start tearing into it.

Check that...MY first instinct isn't to start tearing into it.

There are some Men whose first instinct would be to do just that.

Those Men are far, far greater than I. Or at least, they are not as damaged. Those are Men who are leaders, pioneers, entrepreneurs. Those are Men I deeply admire and respect. Men like Bill, or Steve, or Paul, or Jay, or Chris, or Mark, or Richard, or Mike, or many others that I just can't name because I'm not allowed or the list would just go on forever.

Those Men? Those Men are just not me.

I say this not to self-deprecate. Please do not misunderstand. I am not saying I am not a 'good' this or 'good' that. I have my value. I recognize that I have certain strengths and that I have accomplished quite a lot of things, blah, blah, blah...what I am saying is that I recognize one of my greatest weaknesses is my lack of focus and my tendency to put things off or Matrixize my mind when faced with too many things.

Inherently, I am not lazy, and that's the Truth. Ask anybody who has ever seen me working 16 hour days. If I am passionate about something, I work my ass off. I'm dedicated, I am a workaholic, and I do have some other unique and interesting characteristics.

But for some reason that baffles me, and maybe this is something I have always been, maybe it is something that is new, I get locked up by stuff. I get bogged down. And I have to 'work through it'. To some people, getting through obstacles, or around them, or through them, it comes naturally. For me? My personality type is more calculative and much more time-consuming.

I resist, and always have, falling back to the ADD diagnosis, which I have and take medication for. I don't know why but I hate using it as a crutch despite its realness.

Maybe it is the same reason I resist falling back on the stuff that went on when I was a kid that may or may not have resulted in PTSD, or even blaming anything that is going on with Bennett, or ANYTHING like that...I just get a bit weird about that kind of thing.

I want to believe that I have the ability to have control, even though I can't seem to maintain it.

It may not be he Truth, but I want to believe it.

Of course, with that comes the disappointment if and when I meet any kind of lack of success, because in the end you don't have anyone to blame BUT yourself. But for some reason, I prefer that over trying to shift the blame to a diagnosis. Call me crazy (it's OK, I probably am) but there is a certain logic for me here.

But all ramblings aside, trying to unplug from the un-reality of The Matrix and stop logging so much X-Box time was something I had to do.

Day One, yesterday, was wild. I actually spent a lot of time with Carter in the evening. More than I have in a while. And it was nice. I sat with him and his Mom while Carter worked on some 1st Grade homework and was blown away by the stuff he was doing.

I mean, it was simple stuff I get that, but I'd had my head up my butt for the entire Fall I didn't know he could do all that he was doing! I was blown away. Told him so. And what was coolest of all was that he was blown away that I was up there taking an interest.

Good call to put on the raggedy sweater and eat the white pasty gruel?

Yeah...I think so. Should be a fantastically pleasant week.


Friday, December 02, 2011

Christmas iPad Giveaway at Mission: iPossible!

If you've followed this blog for any length of time, you pretty much know the full story behind a charitable foundation that sprang forth from an iPad contest gone disastrously wrong over the Spring and Summer earlier this year. That organization, which came to be known as Mission: iPossible!, went on to complete its Mission One project at a pace I think everyone, myself included, was stunned by.

In some unreal number like 76 days or some such, the Special Needs Community pooled its collective resources, came together and raised slightly more than $11,000.00 to purchase and ship 20 iPads to 20 kids with communication-related disabilities.

It was a very diverse mixture of folks, which from a personal perspective I found interesting, because it allowed me a fantastic opportunity as a Special Needs father to see a lot of aspects of how the technology helps kids from a lot of different perspectives.

I gained as much from the experience as I put in, maybe even more. But I have written about that ad nauseum, I'm sure most people are fairly tired of my going on and on about what the entire experience has meant to me.

What's most important, most paramount, it what the experience has meant for the kids. I still hear from some of the families.

After the first Mission was over, we took a break to assess where we wanted to take the overall organization. We had something in mind, and needed to wait on it because we needed some more info. In the meantime, while we figure things out, Heather, author of Little Wonders, managed to have 2 iPads come her way, and so we decided to give those away to 2 families for Christmas.

That will be our Mission Two until we can get the details worked out on the larger project.

All the details can be found over on the Mission: iPossible blog. You know the place. It's the one where you hear the crickets chirping. ;)

So if you can, spread the word, let people know that the iPads are already in hand and ready to be given, we don't even need to raise the funds. Otherwise, Heather is just going to send them to me and I will use them to prop up one end of my sofa since it is uneven and they are the PERFECT width.


Wednesday, November 30, 2011

I Thought That No Tonsils Meant No Sicky Sicky?

Isn't that title sort of self-explanatory?

But I can't just leave it at that. Besides, this is BLOGGER, not TWITTER. You know, I don't do the whole Twitter thing. I don't Twat, or Twirt, or Twoot, or whatever they call it. Hell, I don't even do the whole Status Update thing on Facebook very often, though I do use it on occasion.

Nah, were I a Super-Villain I would probably be The Riddler.

Mr. Verbosity. Very prone to lots of talk, talk, talk. Or in this case write, write, write. Edward least as he is portrayed in the game Batman: Arkham City (arguably my favorite game of the year and easily on my top five ALL TIME) really can't shut up, and sadly that would be me.

And yet, would be hard-pressed to find me around these parts.

I was going to deluge last week. I had my whole LOFTY 2011 ready to go. Remember that from last year all Ye Faithful? My List of Thankful Things? Two things made me not do it.

One, my technology issues. Slowed me down to a crawl last week, in what was a short week. So there was no time to finalize all the photos for it. Had it written but there was no time to finish it before a Thanksgiving trip. The second reason I canceled it was after reading a post from a fellow blogger that made me think I just didn't want to.

Not that I wasn't, or am not, thankful and grateful for a great many things. In fact, I plan to re-purpose that list for a revised new End of the Year Tradition. Instead, the post I read just made me go inward rather than outward, and that wasn't a bad thing. Sometimes it might be important for me to do that.

Maybe not everything on my mind is meant for sharing. Capise?

And now I'm just sick. Been coming on me like a trickle as of Monday. Then a creek on Tuesday. Now a river today. Sucks.

Sucks. Sucks. Sucks.

I thought that I would be spared these kinds of colds for a while. But I guess even having your tonsils out does not make you immune from cold viruses. I will say this LEAST I don't have those organisms in my throat that I have to deal with during this cold. Previously, when I had the tonsils in, and they were trapping all my goo, those tonsil stones would just get unmanageable.

But now? All mucus just goes down to the depths. Nice.

Hey...gotta add that to my Year-End List...


Wednesday, November 23, 2011

Amazing What Happens When Technology Fails You

You don't realize how much you become dependent on a technology until you can't use it.

Typically in this House of Dripping Walls, it is when the power goes out, which happens quite a lot. And it ALWAYS happens during times that leave me shaking my head. Could be raining like the 40 Days outside and the power doesn't flutter a bit, but on a sunny, moderate day in mid-May suddenly power for 3 hours.

We live on the shittiest grid in the county.

But I'm not talking about power, I'm talking about other technology. This time I am talking about e-mail. I have several e-mail addresses, all used for different things. Many for my freelance business and part-time eBay stuff, others for Mission: iPossible, and still others for personal use. All filtered to this computer through a single e-mail program for my convenience.

I maintain my own FTP and a few web addresses for all this stuff, and the main host/server that I use was getting pummeled by junk mail lately, so in an attempt to 'fix' the problem, the host/server installed some kind of filter on to my account on Monday afternoon.

The problem is that it is FILTERING EVERYTHING!!!!

I am not getting a single MUFUGGIN' e-mail sent to my computer at all!

So now, trying to get it reverted BACK to what it was is taking forever, meanwhile I am in deep, deep shit trying to manage stuff, manually check some places to see if things have shown up where they should, though I know I am missing a TON of stuff, and BTW what the hell happened to all the correspondence from Monday to right now? No one knows. And why does it take so long to get an issue like this corrected when it was so fast and easy to get the freakin' filter turned ON in the first place?


OK...I'm done.


Monday, November 21, 2011

Two Pieces of Buried Treasure

I am a Hoarder.

I've gone over this before. And the truth is, Thank God I am. It has served me very well in these dark days of self/un-employment as I try to figure out where to steer my career now, because so many of the things I have hoarded in my life can be sold off as needed to make ends meet.

I hoard personal stuff too, though. Photos, letters, and not just those made of paper. The digital kind. I recently stumbled across both types, each related to the other, while I was trying to organize what is, essentially, the un-organizable.

One was a small cache of ACTUAL physical printed photographs of Bennett when he was in the NICU, that first week or two when he was born. I did not take them. I think his Aunt Mandy did, though I am not entirely sure. And I am not entirely sure how they ended up in my hands either.

But they did, and I found 'em, so I eventually got to them in my rather large 'TO BE SCANNED' pile.

The other find was that of the digital variety. I might have mentioned that I used to blog at some other places, like Palisades Toys, and after that on a blog called Grey Matters for a small business I started called Creatus Maximus.

While Creatus Maximus exists now only as the branded name for my freelance work, it used to have its own website when it was an attempt by me to facilitate the production of artists' products, but I ultimately made some stupid decisions and couldn't get over the humps needed to make it work.

Hindsight? Yeah...

Even though that CMX website is long gone, I have a textual archive of the Grey Matters blog, thanks to my good friend and former Palisades and Creatus Maximus mate Chad McCoy who, VERY sadly, has been more in touch with me recently because of a seizure event his daughter had.

I am the 'Resident Expert' on Epilepsy when it comes to my friends. His daughter had what I think was a febrile seizure, and so far only the single event, but we are still sifting through some stuff, and not sure how much or how little he would feel comfortable with me sharing.

So thanks to him I at least have the text, and the HTML references to the images that accompanied the text. AND, since I saved all the images on my computer, and labeled everything by a very specific filename with a date stamp in the title, they are, naturally, easy to find and match up.

If only the PALISADES Daily Bit stuff I have saved was that easy to manage. I was not that web savvy back then. It is so all over the place it is frightening, and much of it is lost, too, since a TON of the Made in China stuff was entered directly into the website by hand, with no copy saved by me in the computer, and since the website is gone so is the content.


Be that as it may this weekend, Saturday, I stumbled across an entry from the weekend that Bennett was born, then Sunday, the VERY NEXT DAY after I found these new photos...that I had previously not published and forgotten I even had.

Of course I SAY previously unpublished, because even though I went back and looked through the past year of Bennett-labeled posts I could not find these, who knows? I might have published them...but I think I haven't. I did learn one thing. JESUS I repeat myself a lot. No wonder no one comments. It's like watching re-runs of Gilligan's Island. is the text, with the photos peppered about.
Grey Matters: Unexpected Events
Sunday, November 11, 2007
What a weekend I have had. It's amazing how much life changes on a dime when you never really expect it to.

My wife is expecting our second son in the first week or so of December. On Friday night, she went to bed feeling uncomfortable, and at 3:30 AM she was waking me up saying that we were going to the hospital. She was in labor and she had called her doc and that's what he told her to do.

Honestly, when we got there, we both thought that it was a false labor. The doc figured it probably was also, and gave her some medication designed to stop the contractions in the event that it actually turned out to be just that.

It wasn't.

The meds did not work, and so by 8:00 in the morning she was being prepped to go in for a C-Section. It had to be that way because that was how she had our first son, Carter, since he was breach, butt down, and couldn't be turned.

The last time she had the procedure, I had a grand daddy anxiety attack and had to leave the delivery room and lay on a gurney in the hallway outside. This time, they all talked me into staying out completely, so as to avoid any possible complication with me hitting the floor.

I hated that, though I understood it, and I stayed out. I got to see the baby VERY briefly, but then they had to whisk him up to the NICU, that's Neo-Natal Intensive Care Unit, in case you didn't know that, and that is where he has been ever since.

He has to be given oxygen, fed through a tube intravenously, injected with antibiotics, and kept fairly isolated in an incubator. While his chances of reaching a point of 100% normalcy are good, I gotta be honest with you and say that there is nothing that prepares you for seeing your baby hooked up to junk like that, especially when you can't really touch him for long and you can't hold him.

It has been tough for Jen, and for me...though she was able to hold him for a little while early this morning. In addition, we can't take him home for a week or two or possibly more, so you can imagine how difficult it might be.

At first I wasn't going to show these pictures, but I think in the end I decided to because I can't expect to treat his birth differently than I would if everything had gone really well. If it had, I would be posting some pictures and talking about the experience and him, and since it didn't go well I should still stay as true to myself as I can. But the pics are probably much harder for me to look at than they would be for someone else.

That's to be expected.

So that's it will be a more difficult time for now, at least for a little while, but as of 8:25, at 5 pounds (TEENY), we added Bennett Leonidas Lilly to our family.
Hopefully, soon, we'll get to bring him home.


You know I tend to always cringe when I read older stuff of mine. I didn't cringe as much when I read that, since it is, at least, from the heart.

But a couple of things leaped out at me.

One, the fact that I was convinced that everything would be 100% normal. Fact is? IT WAS. For 15 months, after we got home from the NICU, everything was 100% fine. We had NO idea about the time bomb being built inside that boy's brain or what catalyst would set it off.

The other thing I notice is that I was holding back. A LOT. I've changed in that regard.


I didn't reveal how bad things were for Jen and I. How I was not supporting her at all. How shitty of a husband I was at that time. I would today. I would use this space as a place to work through that and try to come out better on the other side of it somehow. But then? I think I was still timid about revealing too much about the darker aspects of me. Maybe I felt like I had an image to maintain or something.

But now? I just don't care.

No, scratch that. I care, certainly I care, and I do take a risk by opening myself up like this, but it is the path that I choose and I find it the most comfortable...I just have come to know and ACCEPT that I am flawed human being who makes mistakes, but that doesn't make me a bad dude.

Not too much. ;)

Owning my mistakes and being open about the crap in my life is what works for me. Doesn't work for everybody else and that is totally cool.

But it works for me, cause I get to own the good stuff too. And I like that.

Anyway, just thought I'd share a bit of that buried treasure. Maybe it will inspire some of you other Hoarders out there who take crap from your significant others to dig up some stuff like this and use it as a shield the next time you need a little 'D'...


A Beautiful Blank Page

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a tem...