Sunday, January 31, 2010

RMH Funkiness

In Cleveland now, staying at the Ronald McDonald House.

A bit of funkiness this trip. Whoever stayed in the room before us did NOT clean the sheets. As I took them out of the closet to make the beds I noticed a bit of a funkiness to them.

No outright BO or foul smell, just...not right. They did not smell like freshly laundered sheets. Of course, it's late on a Sunday night, the Linen closet is locked and I have no desire to go bother the night caretaker. So I go to the laundry room to wash the sheets myself.

All out of soap.

Someone did not refill all the pre-measured soap cups. So, I looked in the bin of all the soap cups that people had dumped their liquid detergent into their laundry from and then tossed in the bin. Took me 20 painstaking minutes, but I managed to consolidate some of all that into a full cup.

Sheets are being cleaned as I write.

Tomorrow only one appointment with the Epileptologist, probably just to go over the medications, ask follow-up questions and the like. I expect no major issues tomorrow other than Bennett getting extremely bored, and maybe us too.

Tuesday is the MRI. Let's hope that there's nothing growing in his melon except the good stuff. I assume we will go over MRI results with the folks we have appointments with that afternoon.

You know...I appreciate the RMH charity in a major way, I really do. But holy cheese I hate staying here. It is SO fucking sad. So many kids, so many issues with them. It only adds to an otherwise overloaded mental weight. But, like I said...I appreciate the charity. In our current financial situation staying at the hotel next door just isn't in our budget.

So, we'll hide in the room as much as we can. Read, play with Bennett and I'll try to avoid so much contact with the occupants of the house. It is just killing me this time out to see them. Or...I may take a different approach if I can find the balls. I might just go around and start up some conversations and see where it leads.

But gotta LOCATE the balls first. And those babies are pretty shriveled with cowardice at facing these medical issues of late.

Anyway...probably by now the sheets are ready for the dryer. Wish me luck. I'm hoping there is a fabric softener sheet lying around.


Friday, January 29, 2010

Holland Sucks

Not the actual country of Holland, mind you. I have nothing against it. In fact, I've never been there. From what I hear they have some lovely windmills and some over-the-top porn, but honestly that is the extent of the very limited and likely flawed knowledge I have of the place.

I'm talking about something entirely different. Most parents of so-called 'special needs' children are probably aware of what I am talking about. A very beautiful piece of writing by Emily Perl Kingsley, a former writer for the television show Sesame Street, winner of 12 Emmy Awards, and author of several children's books. This 'poem', called 'Welcome to Holland', is the author's attempt to explain what it was like to raise a child born with Down's Syndrome.

The piece wants to lead you to believe that even though you think you're life is going to turn out one way, but instead it turns out entirely different, that in order to cope and to hope and to get the most out of the experience of the life you are now living you need to embrace it, and look for all of the good things in this new place and forget about the place you THOUGHT you were actually going.

In a nutshell, the piece tells the story of a traveler, who planned and prepared all his/her life to go to Italy, and instead ends up in Holland. Differently put? When life throws a pile of lemons in your face, you need to make lemonade out of them.

But I have news for you. It isn't all that easy for us simple folk.

Yeah, here I am, busting the balls of the poem 'Welcome to Holland', something that is sure to draw the ire of many people who use that poem as a guideline to life. Why am am I doing this?

Because I have two emotions of late that are consuming me bit by bit. Sadness and anger. I seem incapable of expressing anything BUT those two things. I don't know why now as opposed to at other times. I don't know how to change it. I don't know how long it will last. I don't know if what I am experiencing is 'normal' for a 42 year old man in this situation or if I am just a Class A Jackass.

Probably the latter.

But people need updates. I realize that. The e-mail quantity tells me that. I understand it. I appreciate it. When you're mother sends you a message asking 'Are you ever going to blog again?' you realize...oh shit...some people actually DO depend on this thing for information and check it regularly. I get it, and in some way...there is some comfort there.

But, I have been resisting this blog for one very simple reason. I am so full of negativity right now it hardly seems right to come on and just bitch and bitch and bitch about any aspect of anything. ESPECIALLY when there are so many, SO many, people experiencing things FAR FAR worse than what I am going through.

Why, just yesterday, two people whose blogs I subscribe to posted updates and it had been a while for both. BOTH of these people are going through way more than me, and yet both have found a way to remain very positive despite all the crap life is throwing at them and their beautiful, innocent children.

I envy people like those two, or Ms. Kingsley, people who rise above the shitty plate they have been served and become inspirational, noble people. It really is the key to a contented life, no matter WHAT your circumstances are.

Me? I am a simple, mediocre person, and I cannot seem to rise to that level and become more than the bitter, broken, scary human being I am as I sit here writing this. Maybe, someday...that could be me, that person who is inspirational rather than a force of raw, frayed negativity.

Maybe. Someday. I hope so. But not today.

And I say that I am mediocre not to belittle myself, but it's just an admission of fact. Fame will likely not be my destiny. Nor fortune. I will probably not cure some horrible disease. I will not score the winning touchdown in the Super Bowl. I will not walk on to a stage to cheering crowds. I will not be thanking the Academy.

I will be somewhere, making my way through life as best that I can, doing things that in the Grand Scheme of The Universe in Totality (or at least Earth) will hardly be a blip on the radar. I will likely have a small, somewhat insignificant obituary on the day that I die, and very few people will even know that it has happened. My funeral will be small and not covered by all the networks.

You know the truth is I have always been fairly cool with that. As long as I had my inner circle, my family unit, my few close friends and companions. I never wanted to be anything OTHER than mediocre when it comes right down to it...and simple? I like that. The less complex my life the better.

But nothing is simple right now. Nothing. And as I watch my world coming apart around me I can find pleasure in SO very little. I can find positive in so very little. I've talked about perception before. Probably in one of the few recent blogs I bothered to write. You can look at a glass as half-full or half-empty, and much of the power you have over that is something within your own ability to influence.

A good comedian, who is in the hospital recovering from an attempted suicide once said this.

'People ask me if I am a glass half-full or a glass half-empty kind of guy. I'm a glass half-full kind of guy, no question. But what's IN the glass tastes like shit.'

And that's where I am today. I don't know where I am headed, I don't know what it is going to take to start going in the opposite direction from down. Because when you get to a point like this mentally, even good things are bad. Only a few people out there probably even understand what that means.

Clearly I need help. Clearly I'll have to spend some real time and effort trying to get that help. And clearly I will put it off for as long as I can as I am often prone to do and this thing in me will linger and get stronger.

Such is the way of things in Lillyworld.

But there are updates. Always updates.

Bennett still does not really speak at all. He still cannot communicate with us or we with him. We still play the guessing game, ala an infant, to figure out what he wants. He has a very difficult time with a lot of things. He still does not procees things like a TV show and watch a learning program or anything like that.

If you hand him a piece of finger food, he must place it on the floor, touch it with his index finger, pick it up, then put it in his mouth and eat it. He rubs the air vents for 20 minutes at a time. His fascination with wheels is remarkable. There are many times when he loses a very Rain Man kind of way, where he becomes inconsolable and even hits himself.

But...he laughs, he smiles, he plays. He runs, he goes up and down the stairs very easily now. He's figuring out how to use a spoon. He can engage with a toy for quite a long period of time. He interacts with other children and people as best he can, more instinctively than intellectually.

And...he has had no seizures since his surgery. Not one. And yes, despite where I am mentally, I appreciate the HELL out of that. Tomorrow we go to participate in a Stroll for Epilepsy, a charity fundraiser for Columbus.

I swear to you, if I see a kid having a seizure I will not be able to stop the tears. Seizures, seeing them happen to a child and knowing what they do to a child...well, it's pretty much one of the most shitty things I have ever had to know in life.

Monday and Tuesday? We go back to Cleveland Clinic. He will have an MRI, meet with the Epileptologist, the Neuro-Surgeon who cut out the tumor, and the Neuro-Psychologist. An EEG will likely be in his very near future.

On Wednesday, Jennifer and I attended a preliminary meeting at Step by Step Academy, the special 'school' for children with Autism and other Developmental Delays that we have been trying to get him enrolled in. We were on a waiting list. A spot opened. He starts February 8th. Monday through Friday, from 9am until 4pm, he will have ONE ON ONE ABA Therapy. We are hoping this will be very good for him.

Why am I not screaming for joy on the mountaintop? Cause that has got to be a great thing right? Yeah, it is a great thing, but like I have 'mental condition' is too fucked up right now to experience the hope or the joy for what should be, SHOULD BE, a step in a better direction.

Actually, my Mom said it best, when I had my last phone call with her to tell her that Bennett got into the school. She asked me why I didn't seem all that happy about it.

'Happy?' I said. 'Nothing really makes me happy. It's great that he got in, but I don't feel any differently today than I did yesterday. I can't get to that kind of a place.'

I struggled with trying to come up with an analogy for her, but she actually gave me a GREAT ONE. One that I will use the rest of my natural life.

'I think I understand,' she said. 'I guess it would be like me asking someone why they weren’t really happy with their nifty new prosthetic leg.'

That summed it up for me right there. Yeah, the new prosthetic leg is cool. BUT I LOST MY LEG AND AM NEVER GETTING IT BACK. Yeah, the enrollment in the special school is great, BUT MY SON HAS A DEVELOPMENTAL DISABILITY AND ODDS ARE HE WILL NEVER REALLY LIVE THE LIFE I ALWAYS DREAMED OF FOR HIM.

So, that's where we are with Bennett. I struggle with finding and latching on to the positives, that's my problem. There are positives, certainly. There are also negatives. Could be better. Could be a lot worse.

Eventually, my hope is that I'll stop being pissed off. Then things can really start looking up. For all of us.

As for Carter, poor little guy. He hasn't been in Taekwondo for two weeks. First, he pics up Strep Throat. Really zings him. He had not been sick in a long time too, but this one cooked him pretty hard. On top of that, he gets some kind of Scarlet Fever that then gives him the most awful, itchy rash...lasted for DAYS. Only now has it started to clear up.

And that, in the longest nutshell you will ever see, is what's up in Lillyworld right now. I'll try to not let it go this long again. 2.5 weeks is a long time to leave people whom I care about and who care about me and my family in the dark. I'll endeavor to pull my head from the confines of my butt a little more often.


Wednesday, January 13, 2010

Fledgeling Ass-Kicker update on Bennett and all that stuff. Still want to, but I'm having a difficult time putting everything down in a manner that pleases me. Scratch that...not pleases a manner that is as precise as I want to be. Not sure why precision means that much to me, sometimes I just let my cyber-lips flap away, but these are dangerous grounds sometimes, and I want to be sure I say exactly what I mean and mean exactly what I say.

And yet, despite the numerous starts/deletes on a Bennett-Specific update, I am still compelled to put SOMETHING in here, if for anything else just to let those that read this blog (as a way of keeping tabs on whether or not I've finally jumped into the Great Abyss) know that I haven't, as yet, taken that plunge. the meantime, enjoy this picture of Carter in his Taekwondo uniform, not sure what the technical name is of the outfit. He did NOT want this picture taken, for some odd reason.

Anyway...he is up and down about whether he digs Taekwondo or not. Sometimes he says he likes it, sometimes he says he wants to stop. Never know if I should push him or let him so what he wants. That's one of many aspects of parenting a kid when it comes to sponsored activities that I am FAR from really knowing what the hell I am doing.

I do think it's funny that the World Taekwondo Federation initials, that they use on their stuff, is WTF. That always makes me laugh.

But I'm easy.


Monday, January 11, 2010

OK, I Admit It...Something's Up

Yeah, head is in a shitty place.

Yesterday's Ravens/Patriots game and the Cardinals/Packers game were both nice nuggets of coolness over the weekend. Though I was EXTREMELY unhappy about the outcome of both of Saturday's games. I did not want Cincinnati to lose to the Jets, and I was mortified to see the Eagles lose to the Cowboys for the second straight week.

Friend of mine put it very well...the window has probably closed on the Eagles for a while as far as their Super Bowl hopes are concerned. Sucks.

So where was I? Oh yeah...back to the poop thing. My mind HAS been in such a shitty place lately and it has affected my blogability as you may (or may not have) noted. How you like that? New word. BLOGABILITY. I just invented it. Probably not, some numbnut probably said it already. Doesn't make it any less cool, just means I probably am not going to go down in history as the inventor of a new word.

As I rounded the corner from 2009 into 2010, I had hoped that I would feel a resurgence, a sense of renewal, a revitilizationn so to speak. Didn't happen. Maybe I was a fool to believe it would.

I mean really...what would make January 1 any better than December 31 if you really get right down to it? Nothing. Except you. And in the past while I have had the strength to initiate positive transition using the famed New Year's Day as the springboard, this was not the case this year.

Just didn't have it in me.

Been very hard for me to 'keep my chin up' or 'have a positive spin on stuff' when Life just feels so...I dunno...hard. And this coming from someone who has been through some hard stuff in his life, who has often battled depression. Who has often WON those battles, in fact more times than I ever really give myself enough credit for.

Been taking an anti-depressant called Lexapro of late. It is not, though, for those of you unfamiliar with the way these kinds of medications work, a 'happy pill'. It isn't like, say, taking an opiate...where you have this false sense of well-being for a few hours and you love everyone and everything. Doesn't work like that.

Frankly I don't know enough about the bio-chemistry to TELL you how it works, all I know is what this particular medication type does for me emotionally. It does not take away my depression. It does not take away my anxiety. It seems to, for me, suppress some of the more intense emotions that I might normally have associated with depression.

No, it isn't Domo Aragoto, Mr. Roboto, either. I do HAVE emotions, they are just sort of muffled. Sort of deadened. Actually, the best way to describe myself when I am experiencing most kinds of emotion is sort of like it feels when you walk around outside the spaceship in the game Dead Space (which my wife has officially now accused me of playing too much).

Everything is muffled in your spacesuit, sounds I mean, and all you really hear very well are the sounds YOU make from within your spacesuit, your breathing, your grunting, your screaming in terror and so forth.

But the Lexapro does not help me much with anger. It does some, though not as much as I like, so I have outbursts sometimes, when things feel like they are just too much for me to handle. Sucks too, because as it normally goes these outbursts are always directed to the people you love the most, because those are the people you are AROUND the most, so when the outbursts occur guess who gets caught in the cross-hairs?

Perception is everything, isn't it?

How you choose to view your life, how you choose to perceive things around you, being positive or being negative...that's the real key to understanding the nature of your very existence from day to day. I wonder what it is about some people? I know some of these people, who have an amazing ability to just take some turd life hands them and ask for seconds, to laugh in the face of tragedy and kick negativity's ass no matter how bad it gets.

I envy those people. They have remarkable resilience. Faith is a big part of that, but I've known non-spiritual folks who can do it too. It's certainly worth further study, don't you think? Some head-shrinker somewhere ought to be writing a research paper about why some people lean towards the positive and some people lean towards the negative when it comes to the glasses with which they view the world.

I'd read that.

So anyway...that's, in a nutshell, an update on me and my life which, now that I think about it, reveals absolutely nothing. Other than the fact that I feel like shit lately and have been doing less blogging because of it.

Maybe tomorrow I'll tell you how Bennett has been doing, a real 'report' so to speak. I'm a bit curious myself how to put all that into some kind of perspective.


Wednesday, January 06, 2010

Two Birds. One Stone.

A little backstory.

Over the Post-Christmas weekend, I went with Jen and our boys to a small town near Cincinnati for a Christmas party there attended by the folks from Jen's Dad's side of the family. We stayed at a Bed & Breakfast overnight. Very cool. A good time was had by all. Now, my sister-in-law Mandy has a couple of boys, Jackson and Anthony, and they were there too.

Well, I had my laptop, was showing some people a bunch of photos on my computer. Mandy comes over and I show her some shots of her kids and Bennett that Jen took with her camera that Mandy had never seen. Later, she asked if I'd hook her up with some. Sure. Why not?

But, you know me...if I have One Stone (a photo project) and Two Birds to Kill (a request for said photos and a Blog to keep updated) then why not take advantage of it?

SO...Mandy, here are the ones I could find. Just click the pics to go to the larger pic, and then download the large pic. The rest of ya? Just enjoy all the rampaging CUTENESS...

Now...I have GOT to get around to sorting through all my Christmas pics.


Sunday, January 03, 2010

Win...And In...

Congratulations to the Baltimore Ravens, who, despite a dismal 9-7 season, managed to squeak into the playoffs by beating the Raiders today. Second year in a row that we've made the playoffs. Nice.

And, since Wes Welker may be SERIOUSLY injured now, our chances of a win in New England just improved. Now is the time though...Baltimore has never beaten New England in their young history as far as I know, and I hope this is the time that our losing streak against them ends.

Should be a fun wild card weekend. I will be alone most of that weekend as Jen is taking the kids up to her sister's, so it'll just be me, football, X-Box 360 and take-out.


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...