Thursday, January 26, 2012

500? Does it Matter Anymore?

People are starting to worry about me.


I had hoped to write something very cool for post #500. Ain't gonna happen.

I can only describe my son Bennett's behavior as manic. Almost maniacal at times. Aggressive and then wildly giddy. And Carter? I feel like he just slips away from after day. He doesn't really understand why things are the way they are with Bennett. I wouldn't either at his age.

It's fucking insanity in this house right now. On all fronts. I have something wrong with my eyelids now. Meibomianitis. Yeah...that's a new thing. Just found out.

Apparently, all the dry skin from my forehead has, over the past year, collected on my wet eyelashes from having had too many days of teary eyes, and the natural bacteria in my eyes have feasted, so my pores in my eyelids are all clogged.

Our Home Health Aide's mom passed away on Sunday. Lost her battle with Cancer. She is like a part of the family, which in and of itself is bad cause you feel bad for her. But then she needs time away...and hence, our stress level doth rise because we are floundering.

We cannot get Bennett seen by ANY local behavioral psychologist. And we've tried them all. A few places have tried to refer us to the hospital here in town that fucked him up in the first place. Eventually I got tired of telling that story to uninterested people.

So what the FUCK is it going to be tomorrow?

I'm just pissed, what can I say? I'm in a bad place, that's just the way it is. So yeah...everybody who has sent me messages, saying they are worried...this time?

You have every right to be. For a while.

But I will get past it and climb over these humps too. It will just take some time.


Saturday, January 14, 2012

OK, I'm Cheating

Not THAT kind of cheating.

I actually went back and deleted a post that nobody cared about, one of the many about those block figures I love so much that, frankly, just don't belong here anymore, in order to make THIS post NOT be the 500th post of this blog.


Because all of my Blogbuddies are talking about this article and posting about it and spreading the news about this and so I wanted to also join in.

It's amazing, mind-blowing article about the absolute worst the medical community, and perhaps humanity, has to offer. Some people in a hospital apparently taking the position of stating they will not perform an organ transplant on the disabled daughter of the author because she is 'Mentally Retarded'.

You just have to read it.

Me? I'm having a weekend from Hell. But my son is having it much worse.

Bennett is slamming his head into pretty much anything and everything. He's hitting and biting and beside himself with...whatever it is that is driving his emotional state through the friggin' roof.

SO...I probably WON'T be finishing the 500th post this holiday weekend, OR my Fruitless Pursuit offering, OR my iPost about Helene's receipt of the iPad from Mission 2 at Mission iPossible (which I do have pictures and text for (thanks Suzie!), OR the announcement of Mission 3 (which we are ready to start, we have the funds now for I believe 6 iPads collected, yup you heard me...SIX).

But all of that has to wait. I have to try to take care of my own right now because right now my family is tearing itself to shreds.

Gonna work through it. Gonna figure out a way.

Because my weekend is nothing compared to what others in my family are going through. I'd like to take a minute to say a couple of words about the passing of my Uncle Lloyd. He died yesterday in Arkansas. My Mother was at his side, has been for weeks, as he finally lost his battle to lung cancer.

Of my mother's brothers, Lloyd is the one I knew the least. Mostly because of location, he just always lived furthest away from wherever it was that we lived. So I can't speak much about the man, since I hardly knew Lloyd, I can only speak about my Mother, whom you know I admire, and love, and worry about, probably more than I should. The worry part...but you know what I meant.

That photo is an oldie but a goodie. It's my Dad there, my real Dad, who I never really knew, my Mom, my Grandmother, my Uncle Gary barely visible at far right, and Lloyd is there at the far left. It is the only photograph, or one of the few that I actually possess, of Lloyd.

These photos carry with them a certain weight now. So many people lost. Of the people in this picture that had or have any significance in my life, the only one left is my Mother.

One thing about my Mom. She never expects praise. Doesn't even care for it all that much. It's always been her way.

She's probably fairly uncomfortable with this particular blog section, to be honest. But these are my thoughts, my feelings, and I never really hold back. And why stop now, right?

But I have to say, that the way she was there for Lloyd these past few weeks was just...remarkable. Her and Ken (my stepfather) both. And my Mom's other brother too, who I could write a novel about (the man is so interesting), but suffice it to say they all stepped up to the plate in ways that...well, in ways that are just...who they are.

And that's maybe the greatest compliment of all, when it comes right down to it.

At the core they are simply...good people.

A sharp, sharp contrast to the type of folks in that article, yes?


Wednesday, January 11, 2012

Along For The Ride

Apparently, accompanying the recent addition of tears and other emotional outbursts that Bennett is experiencing is a whole helluva lot of anger.

He uses the word 'MAD!' quite a bit, and while some of you will say 'Lilly, hey, that's terrific, he's using a word appropriately!', I will remind you that while it is a terrific thing, what is not terrific is the fact that he will, while screaming the word, slap himself in the head, bang his face into a wall, bite his arm until there are actual teeth marks and throw heavy objects across the room putting other objects (and people) in danger.

His eating has become pickier again. Food flies across the room when it isn't what he wants. As the frustration levels increase, the tension level in the house increases. We are all like pimples, swollen and ready to burst.

And I am not setting a good example, because raising my voice to settle him down to keep him from hurting Carter or something like that when he is in frantic mode, while it will work and pull him out of his Tazmanian Devil-like whirlwind of a tantrum, this can't be a good message to send to him. This has got to be teaching him a bad behavior.

I DON'T KNOW WHAT ELSE TO DO. Somehow, I need to learn.

And so, we are really at our wits end in Casa de Lilly lately. Stress levels are high. As high as they have been in a long, long time.

Adding to it?

2012 brings with it a much more expensive Insurance Premium per month, and it was already high. And with that? A higher deductible. And it used to be that one person in the family could wipe the deductible out. So when Bennett would get his first MRI of the year, the MRI would cover the deductible. He has to get 3 each year now to check for recurrence of his Brain Tumor which...oh by the way, the insurance now does not fully COVER the MRI, but he is on a Level One Medicaid Waiver that covers the rest, Thank God.

I do still know that I have to be thankful for that in light of the fact that 2 family members have to NOW split the regular insurance deductible. Which means, now I need to get really sick. Or someone does. Because otherwise we ain't meeting it until sometime over 2/3 of the way through the year. And that's going to hurt. BAD. In addition to the $160.00 extra PER MONTH we now will be paying in premiums, I mentioned that, yeah?

SO...I have a decision to make. Well, I've already made it, I just have to talk about it. I've mentioned it here before, but I am on a shitload of medications. As of now, I am going to have to stop taking some of them.

I don't have a choice. We just cannot afford to buy them each month. We don't have the money. It doesn't exist. I'm not going to stop buying Bennett's medications. I'm not going to stop buying anything else my wife needs or Carter needs.

So it's up to me.

Some of what I take, I take because I allowed things to happen in my life I had control over. Some I take because I have to. The ones I have to, I will still take, but I will start looking into ways to cut them out. The ones I take because of the way I lived, I will stop. And I will compensate by changing the way I live.

I've changed things before out of necessity. I've changed things before out of desire. I quite smoking over three years ago because I was inspired by my Mother, who quit after smoking her entire life. I quite drinking Diet Coke and other carbonated beverages last year, after drinking at least 3-4 a DAY for as long as I can remember, because I found out I had Laryngopharyngeal Reflux.

I can do more. I will have to do more.

Conservatives I know rip the Hell out of the so-called 'Obama Care' Health Care Reform and love to talk about what a crappy president the man has been. All the Republicans have done since they took over Congress has been to cock-block ANY significant change for the better just so that they can try to make it easier to win a presidential election with a bunch of shitty potential candidates.

That's despicable. And you know what? Were the situation reversed, the Democrats would do the same fucking thing. Party politics is ugly. It gets us nowhere. But I am a simple man, maybe it is just beyond my understanding.

Over this past week, I have started re-organizing a ton of my Facebook photo folders, mostly for the sake of my Mom, who has been spending a ton of time in the hospital, caring for a family member, who is not doing well. I try to load new pics when I can, so she can have some stuff to look at. I've also been posting more, so she can have stuff to read.

On the X-Box 360, I have a Facebook App, which lets me view the photos on the big TV, and Jen and I and Crystal (the Home Health Aide) were looking at a bunch of photos and we came upon a trio of photos of Jen, Carter, Bennett and me from Bennett's first birthday party. I paused on them and had some tears in my eyes. They weren't falling, I just looked...moved.

I was trying to explain to Crystal the reason why. See, she doesn't know the Jennifer and I and Bennett and Carter before The Incident, before The Infantile Spasms, The Tumor, The Surgery, The Autism and Everything Else. She only knows us as who we are right now.

And there was something about the photos that had a unique significance and meaning to me. They were special to me, they ARE special to me, because it was probably the last time I could remember the four of us being in a group of photos together where we all looked happy, where we all seemed like we did not have the weight of the world on our shoulders.

It was around 12 weeks before Bennett's seizures started. 12 weeks before Ground Zero.

It was hard to actually click the button and keep going forward in the Slideshow.

You know, as we turned the corner into this year I was feeling very optimistic. And when Jen brought her paycheck home and told me this stuff about her insurance, it really kicked me in the gut. It didn't help that it was on the same day that I got hit with two unexpected bills and a return on something I had sold.

Bad day all around.

But her news just reminded me that we still have so many obstacles in front of us, and sometimes it feels like we are never going to be able to punch through them all. I was really down for a couple of days. Bennett's recent swing into this unexplained emotional roller coaster has not made our lives any easier, but these feelings weren't really about Bennett exclusively, they were more about Everything.

They were more about how difficult Everything has become.

But then I remembered, again, a Truth that has been forgotten then remembered, forgotten then remembered, forever getting lost in my head, eluding my conscious mind always when I need it the most because of all the Piles of Bullshit that gets stacked on top of it.

Isn't that the way it has ALWAYS been? Isn't that how it always WILL be?

Isn't that just Life?

Isn't Life just a series of obstacles to overcome? Isn't it just a set of problems to be solved? And does it ever really just 'go your way'? Maybe sometimes, when you are lucky, but most of the time you do need to nudge it in the direction you need it to go or just relax and roll with it and be prepared for any changes in direction that you might have to take.

Because there are many. And there always are. And not just in Our World. In everybody's world. Because we all struggle, even those of us without kids with disabilities. It just takes on different flavors, different tones. I think we, as parents, with these kids, I think we feel a special, unique kind of pain. I really do. But I think a lot of specialized groups feel a lot of specialized pain, too.

But I think that there is pain and suffering everywhere, no matter what group you belong to. It is part of the Human Condition. That's just Life.

What am I saying? I am saying, or trying to, that believe it or not I STILL FEEL optimistic, despite everything I just told you I was scared and freaked out about.

Because the alternative? Well, to see the alternative all you have to do is go back and read the last three years worth of blog posts. I don't like that alternative. That isn't the place I need to be.

And here, in this 499th post, as I turn the corner into my 500th, I would like to think that I've learned a few things on this journey.

In the past couple of years, as I have reeled from some of the blows received, I've often felt like a passenger, that I was just along for the ride in my life. I have felt as if I was not really steering the H.M.S. Lilly. Many time it has seemed as if my ship was adrift at sea, and aboard her I war merely a stowaway, sneaking out of my hidey hole occasionally to steal an apple and some moldy bread.

But now I feel a compulsion to stand at the helm, to take command, to lead her out of the deluge and into calmer waters and, with any luck, maybe reach an island or two from time to time where we can make port and spend some time relaxing and take refuge from the salt and the storm.

That's why I choose to remain optimistic.

Because I need to be.


Tuesday, January 10, 2012

I Think God Has Better Things To Do On Sunday Than Watch Tim Tebow

There. I said it.

Now get over it.

I'm not anti-God. I'm not anti-Denver Broncos. I'm not anti-Tim Tebow.

Granted, I am a little tired of the whole 'Tebow-Time' craze, but like most things in this nation, it is just that, a craze, and it will pass. The truth is I don't really care much about it in the long term.

Nor do I begrudge Tebow's expressions of his Faith. In fact, I commend them. Any person is entitled to express his beliefs however he chooses. I have great respect for players like Kurt Warner and Troy Polamalu, both Christians, who openly express and talk about their Faith...and take shots from fans and players alike about it.

What I can't stomach are the flock who somehow suggest, or hint, that God is somehow on Tim Tebow's 'side' because of his Faith, and by 'on his side' they mean not that his Faith helps him NOT JUST in his day to day life like it does for you and me, the regular folk, but they say it in a way that suggests that God somehow influences the outcome of the game itself. (Of course, when pressed, these individuals cannot explain how Denver lost the last three games of the season and backed into the playoffs with an 8-8 record ONLY because they are in the shittiest division in the NFL, but I digress.)

I find the concept of God putting the 'fix' in on a football game to be...monumentally ridiculous. Not to mention short-sighted.

Let's go for the obvious's FOOTBALL, for Chri---, um, for Pete's sake...God is going to decide who wins the game and who loses it? Really? THAT'S what some being who has POWER ABSOLUTE is going to spend his time on?

Then can someone please tell me why...oh WHY, did he let the Pittsburgh Steelers beat the Arizona Cardinals in Super Bowl 43?

Kurt Warner is a tremendously devout Christian. Did you know that when he met his wife (to be), she had a child from a previous marriage, a child with a disability (Traumatic Brain Injury), and he didn't bat an eye? In fact, he treated Zachary with a love and dignity his own father never did? He's a good man, always involved in charitable organizations. I personally admire the guy like very few in the NFL. The typical Quarterback arrogance that usually attaches itself to any gunslinger who has success missed Warner, thankfully.

And of course, Warner is so open about his Christianity that other players often made fun of him.

And yet...God 'let' the Steelers with the Super Bowl. Hey wait a minute...didn't Big Ben go on to do all the stuff to those chicks...allegedly? God would know all that right, being OMNIPOTENT and all, yeah? How can that be the right thing to do, G-Man? I mean, is that just?

My point is, you can probably find a Christian on ANY football team. Or villains. So how can you say ONE Christian on ONE team is more worthy than the other, or more bad guys are on one team than the other, to make one team on the field more worthy of winning?


Which means, logically, that it shouldn't really be the case that one should surmise that God is guiding a spiral into the hands of a Wide Receiver for the winning touchdown. I just don't believe it.

Because like I have always said...if I believe THAT...then I also have to believe that God guided a brain tumor into my son's head. And I just can't believe in a Supreme Being that would be so very, very heartless.

There was a very wacky article on CBS Sports about certain numbers 'aligning' and how it kind of had significance, all relative to 'John 3:16', a passage from the Bible that Tebow used to wear on his eye tape back when he was allowed to. Thankfully, the NFL doesn't allow for that kind of 'personalization' of gear in the pros.

The article shows all kinds of connections, about how he threw for 316 yards, blah blah blah. Yadda Yadda Yadda.

And the fact is, that you can go in and come up with statistical analysis to back up ANY belief system. There are a TON of stats in any game, anywhere. IN fact, I love what one commenter said below the article.

'29 (Den points scored) x 23 (Pittsburgh points scored) - 1 (Tebow career playoff wins) = 666. Oh no!!!!!'

That pretty much sums it up right there for me.

Look, I'm not bashing Tebow. Or anyone else. And like I said, I admire anyone who is willing to put their Faith on the line and express it and put themselves out there and face possible ridicule. Hell, I've done it here.

But c'mon football fans, you have GOT to get over the whole Divine Intervention idea when it comes to the NFL and Tim Tebow. You just gotta.

Besides, everybody knows that God's favorite team is the Baltimore Ravens.


Thursday, January 05, 2012

Got Fruit?

I missed a week of posting at Fruitless Pursuits. Swore I wasn't gonna let that happen since I 're-committed' myself. Actually was doing quite well, though not actually posting reminders here every week, I was still hitting it there, though they weren't always doubles or triples...they were mostly singles.

OK, bunt singles.

OK, OK...hit by pitch. But at least I was showing up to the plate.

And as usual...PLEASE BE CAUTIONED. I curse like a drunken pirate at port over there...I make no apologies for it. (And yes...I do mean WORSE than here!)

Thou hast been warned.


Wednesday, January 04, 2012


Been waiting for quite a while. Finally got some a day or two ago. I'm talking about snow obviously. Not 'some'. Of course, like 'some', it was not really quite enough and it didn't last all that long, but I'm not complaining.

I wonder if this means this winter we won't get much snow or we will get a late deluge? Guess I'll have to check the Almanac.

Thanks for the supposition and support and words of encouragement regarding Bennett's recent emotional roller coaster ride. Appreciate the commentary. I hope it is a sign of good things to come. I hope it is not a harbinger of something...not so good. I remain, with surprisingly little effort, cautiously optimistic.


Tuesday, January 03, 2012

This Is Damn Peculiar

OK, so I spent the last 24 hours or so beating myself to a pulp over yelling at my disabled son and causing him to cry. What's the big deal? I'll tell you.

As I explained earlier, he doesn't really cry all that much, never has. It takes an extreme amount of anything to get any kind of tears out of the boy, and even then it is nothing overly dramatic.

He came home from school today in a good mood, and everything went as expected. When Crystal, the Home Health Aide, had to take him out of my office away from my fan (he got in there because Carter had left the gate to the upstairs open), you are not going to believe what happened as she carried Bennett down the stairs.

Cue: Floodgates.

He had the exact same type of crying outburst that he had yesterday, and I spent the next ten minutes getting tears and snot on both shoulders of my shirt, just like yesterday. The only difference was, that today, unlike yesterday, I was not crying too.

I was perplexed, puzzled and confused.

What in the world is happening to Bennett?

Now, instead of me being nominated for Lousiest Father of the Year for 2012, there is a riddle wrapped in an enigma stuffed inside a burrito (I'm hungry it is way past dinnertime), a new wrinkle in the life of Casa de Lilly. And we are going to have to figure out exactly what is going on. We'll have to, unfortunately, now study every aspect of Bennett's emotions, for days, and try to gather data on him to discover what might be going on.

Perhaps yesterday I didn't yell as loudly as I thought I did. I may have judged myself a little too harshly too quickly (imagine THAT!?!?). But the downside of that is that it means that this is Bennett-centric, and I'd rather it not be.

Could this be related to his Risperidone not really working anymore as his weight/height is increasing? Could it be his personality changing as his development changes? Could it be changes within his already complex and difficult to understand brain, 2/5th of which isn't there? Could it be diet? Environment? Richard Nixon? Martian invaders?

I hate this mufuggin' guessing game.

Why couldn't it have just been me being a shitty Dad?


And So I Did

Bennett is not a boy who really cries. Never has been.

It's uncanny really.

He's taken full headers jumping off of furniture and his parents have had their stomachs go up into their throats with fear and then he has stood up and just shaken it off. I have read a few things about kids with Autism and/or Brain Injuries who experience pain differently than we do. I believe it.

I also believe it to be true when it comes to emotions in general. He giggles or laughs at things that anyone else would, like farts, a perennial favorite, but he also begins laughing or giggling for no reason at all, at whatever performance he may see going on in his head.

Only he knows for sure.

Yesterday, I wrote about my fears that I was at a breaking point. Those fears were not just smoke and mirrors. Bennett threw something across the room at the tail end of a tantrum that was out of control and I yelled at him. And I mean really yelled at him.

I have a booming 'Discipline Voice', and when I say 'No No!' it typically stops him from doing something that is dangerous. This I do not mind at all. In fact, I like it. It certainly is something I liked having in my pocket a week ago, when Bennett slipped past all the chaos when a guest left the front door open at our holiday party and, by sheer blind luck I happened to be outside unloading a car when I saw him darting across the neighbors yard.

MY VOICE stopped him cold. For about 5 seconds. Which gave me just enough time for these 44 year old, extremely out of shape legs to get some steam behind them to start running and catch up to him.

But yesterday, we were inside, and MY VOICE was just...well, it was too loud. And I scared the shit out of him I think.

For the first time in the 4+ years I have known him, he was sobbing. And he was so...confused by it. As if he didn't really understand the emotions that were coursing through him. Of course, I held him, and lost it myself.

This, THIS, was not what I wanted. It is not what I ever want.

Of course, the boy regained his composure far more quickly than the Old Man. I could not contain the flood, and my poor son Carter, age 7 and a half, had to witness it, something I have always tried to shield from him. It was not pretty.

From my background I've always had a unique sensitivity to causing my children pain, physical or emotional. I detest it. I fight against it. And yet, it is unavoidable to a degree. You can't, as a parent, always make your kids happy. That's a Truth with a capital 'T'. But you can, as the father of a boy who has a severe disability, recognize that the things he does he does because he has no other option. It is not his fault.

And what was really punching me in the gut as I sat there, convulsing with tears, is another Truth. As he gets older, what in the world am I going to do if he leaves us? Because how can I possibly trust anyone else, 100%, to care for him? Because if his own father, who loves him with every single cell in his body more than anything else in the world, could be pushed to the brink to yell at him and push him to tears, how would someone ELSE treat him, who doesn't have that love as a fail-safe to pull them back to reality?

Sometimes, a cold dose of parental Guilt is exactly what you need to get your head out of your ass, you know what I mean?

That would not exist if he were somewhere else, and that is a very real possibility as far as his future is concerned. Maybe not when he is a child, but possibly when he is much older. I dunno...I have a hard time seeing him being able to live on his own.

Obviously, I'm hopeful. And I do try to believe that the pace will pick up, that the curve will begin to become steeper and not so...gradual. Clearly, I want to be optimistic that as each year passes he will take broader steps forward, and not take any steps backwards.

But I need to do the same, and figuring out how to avoid letting the steam build up like that to where the cap pops off is critical. I never want to see him cry like that again, especially if I am the one that causes it. Ever. I never want to let Carter get so shaken up and see his Father fall apart like that. Ever.

This Road is hard enough. I don't need to make it harder.

If you decide you want to leave a comment, remember something.

'Don't be so hard on yourself.'

'We all lose it.'

'You can't blame yourself.'

'You're a good father.'

These things, or derivations thereof, I already know. I am just venting a little. Something I should do more of, obviously. But I'm not looking for sympathy, because frankly it is not deserved here.

Something occurred to me while I was writing this post. I think this...compulsion to share these experiences is what keeps me from really leading something like Mission: iPossible to the the next level. As long as I have this blog, and am so personal on it, and I have pics of people with heads up their butts...I don't know how I can balance the two effectively.

Maybe there is a way and I am just not seeing it, but how can people take me seriously as a leader of an organization like that if I continue to expose weakness after weakness in a blog like this one? Does that make sense? And unfortunately I don't have the luxury of going back in time and starting this blog over anonymously.

And yet, I also recognize that my open nature and candor is part of what made it possible to engender trust and security and make that very first Mission of restoration successful. For that part of it there was a relationship that made a lot of sense. But beyond that, as far as growing it into something greater, something more professional. I don't know. Am I really that person?

Perhaps I am over-thinking it. I wouldn't want the stress of the last two weeks to cloud any of my judgment. And it very well might be. My brain has been all twisted up, all night and most of the day.

The funny thing is, today was Bennett's first day back to school.

And all day long? I wished he was here.

Now THAT'S crazy.


Monday, January 02, 2012

I'm About to Lose It

As beautiful and warm and sweet as Heather's first blog of the year was for 2012 is, mine is...not going to be.

I don't know how she does it, to be honest. 347 kids in the house all at the same time? Unreal.

I've only got two, and right now they are driving me fuggin' crazy. Bennett goes back to school tomorrow. Carter the day after. Thank God too, because any longer and I might be jumping off my roof.

Scratch that. Since it was not built properly and leaks like the Titanic, it would likely not support my weight long enough for me to leap.

Bennett keeps repeating the word 'Asshide'. Which either means he really doesn't like me, or all he wants to do is get the Hell out of here. It's his word for 'Outside', which he REALLY wants to get to, but its cold, its windy, and I can't take him 'Asshide'.

Carter doesn't help a lot since he is bored, both his original X-Box (non 360) controllers are broken, I can't find replacements, he has lost more Lego pieces that I have lost hairs, and he tweaks Bennett all day long.

Bennett's also getting much bolder now. And into way more things than ever before. I have to entirely rethink some of the household configurations. And I haven't the first clue. He's not a child anymore, so 'Child Safety' stuff does not apply, he can snap 'Child Safety' stuff like its nothing. But he can get access to kitchen areas now and the like very easily and I have to figure out how to deny him.

He needs his routine back. He isn't so exploratory, aggressive, or self-abusive (yeah, that has been a bit more commonplace this past week say the bruises and bite marks up and down his arm) when he has that. Truth is, if we could just freakin' TALK to each other, it would make a huge difference.

I just keep telling myself to hold on.

To what? I have no idea. ;) To them, most of the time.


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...