Thursday, September 29, 2011

Paths


How EASY it is to stray from a path.

You know it occurred to me, that with all the distractions of the surgery, the Mission iPossible project and so many other things I have not really updated this blog or even my Facebook page with any recent pictures of the boys in AGES.

Strolling through the end of summer and into this Fall, I've been focusing so much on my surroundings, on the minutiae of the journey itself, I've not only lost sight of the path I am walking on, but have you ever noticed that you can often forget about the people who are taking the same journey right alongside you when (and if) you allow yourself to get like this?

It's a sad reality of humanity truthfully, but it happens. At least to me it does. I don't know about anyone else. I HOPE it does. I'd hate to think I am as super incredibly weird as everybody says I am.


But I GOTTA try to remember to come back to the things that matter more often.

These nuggets are important, but I do know why I sometimes avoid them. There are Truths inside some of the photographs and videos that I sometimes take of Bennett that I haven't...what's the word...I don't know that there is ONE word...I just know that even though I keep thinking I have made my peace with where Bennett is, with WHO is he, and where he is headed, I then suddenly realize that I haven't.

I remember a post of Elizabeth's some time ago, but to dig through her shitload of post counts of all of her wit and wisdom to find the exact one would take me forever, but it was about some painfully obvious 'scientific study' that concluded that parents of children who have or have had epilepsy, or disabilities, or something, are depressed.

Um...yeah.


But I remember reading the comments and I wanted to chime in but for some reason I didn't say what I was feeling, which was this.

I think that the sooner you can come to terms with the fact that your life is never going to be the same, the better off you are going to be. But I believe, and this is just me...I do believe that a certain sense of sadness will always be with you...no matter what. However, it can be manageable. IF you have a few weapons in your arsenal.

Weapons that serve your particular battle. Weapons like Faith certainly, for some folks, but I think even more key, or even related, is acceptance. I mean...if you think about it. Once you actually make friends with the Monster Under the Bed, is it really as scary once you get to KNOW it? It may still upset you that it is always there, it may still wear on you, and it may often bring you down...but there may be days when it actually is something you can learn to live with. Maybe even take it out to dinner, have a cup of coffee...cop a feel even.


For me, the more thought I give this, the more I still think I have to move past what was lost. I have looked at old movies of Bennett, something that I finally did, because I felt it was time to do so.

There is one particular disc I watched a few times, recorded in late 2008. It was the four of us, sitting around in the living room, the same one here that I am writing this blog in, in this leaky, falling-apart house where I also recorded Bennett having a ton of seizures. We were so happy, all four of us. Bennett was 11 months old, and he was walking around, a little stumbly, but doing it. He was saying 'Momma!'. At 11 months. He was bright-eyed and cheerful. Inquisitive and curious about his world and his surroundings.

I found myself wondering...was the tumor in there growing yet? Had it started? Was it like a balloon, getting more and more air, just waiting for the right sharp pin, a vaccination that was delivered 4 months later, to make it pop?


With a very tearful face, I realized I felt a sense of tremendous LOSS. And it dawned on me that this type of situation was something I have never faced before. This was my Kobayashi Maru. And something clicked in me. All this time I have been holding out this hope that Bennett was coming back. I looked back at some old blog posts about counting words, and checking at his development post-surgery, and fixating on the phrase 'Hi Daddy!' a lot.

A phrase that he could say, clear as a bell, before the surgery. A phrase that he still, as he rounds the corner on being 4 years old, he cannot say. In fact, if you ask him who I am from time to time, he may say 'Daddy!', but other times he might say 'Kee-kol!' or 'Mommy!' or even 'Car-ker!'.

I found myself using phrases in my writing like 're-wiring of his brain' a lot, and I very much expected, believed, hoped, that things were going to right itself with him. The cold, hard truth of it?


I believed, with all my heart, that since Bennett had a Brain Tumor and that we stopped his seizures cold with its removal, and since the tumor had not returned, that somehow he would start to become more like the Bennett he was before all of this shit hit the fan.

The fact is, the Bennett I knew, my son that I rolled around with on the floor and played with and had all these plans for, really is gone, and he is never, EVER, coming back.

And I think that my ups and downs and twists and turns have all been due, among other things certainly, because I have been fighting the acceptance of that for as long as I have been writing about his journey since his surgery. Or at least for many months AFTER the surgery.

I have been in denial.

The psychological evaluation that he had in July, which still had him in the 14-18 month range in most areas cognitively and measured his IQ at 48 was probably the thing that pushed Jen and I both into the cold arms of Reality.


The boy is nearly 4.

More than you can possibly imagine, I love my sons. I love my family. In so many ways I already, as the Father, feel like I let them down because of where I am in my Life, struggling like I am. All the baggage I brought with me. And now all of this heaped on top.

I swear...sometimes I look at them and wonder if they would be better off without me. And then a voice inside me says 'You know, your Bio-Father probably rationalized the same thought when HE left.' and I resolve myself even more to find strength and courage to make it through another day and find some good in it. Some good in myself.

Is it difficult sometimes to look at photos of Bennett occupying his time at the Washing Machine spin cycle and compare them to the photos of Carter getting on the bus for his first day of school? Yes it is. Two very different paths in life for two very different, two very wonderful, boys.

And yet they also walk the SAME path, alongside me.


I owe it to them both to work harder to get my shit together.

OUT.

Monday, September 26, 2011

Feeding the Beast


It's funny what writing blogs like these inspires in some of the people involved.

Of course, taking an extremely long break inspires, from the readership, two main reactions from two very different groups. In one group it inspires concern. People wonder if I have slipped into some kind of Funk Zone. Am I back into one of my timeless depressions from which I have to work myself out? In the other group, the more casual reader, it inspires the act of moving on, as it should.

If you don't feed the beast, the beast moves on.

Whoa...that is one hairy mufuggin beast.

The fact of the matter is that I have slipped into something. No, not anything lacy and silky, though SingleDad is going to be very disappointed I'm sure, especially after I (hopefully) get to see the pic of his elongated body part he promised in the last post I got around to slapping together.

I've tried writing. I have at least 20+ blogs started and not finished. I simply can't get my thoughts un-jumbled in a way that works for me. And although I would like to place all of the blame on my lack of Blogification on 'The Thing' and my Tonsillectomy the fact of the matter is that yes, Virgina, lately I have slipped into something dark.

Murky and bitter, like I used to like my coffee. And my women.


Shit. My how it do happen.

The thing is, it isn't just one thing that is vexing me of late. It is many things.

Isn't it always?

Sadly, I have also discovered that Mrs. Blogzilly is in the same state of mind, and that is not a good combination. When you have both parents sinking in quicksand, the other one isn't there on solid ground to help pull the other out.

Man...I SO wish I was more like Cat and let things just roll off me. In every way. But alas...who can be?


At first, when I sat down to write this blog, I was going to try something funky. I was going to write a list of the topics that were screwing with my head. Just the topics. It was called 'The Shit List'.

It was a kind of Free Associative Bullshit List Making (I just made that up...gonna take off like Facebook and make me a millionaire and solve ALL My problems!). I was not going to comment on the why, just the subjects. Maybe I would tackle talking about them, but only AFTER I finished my mufuggin Faith opus that I started before my surgery and get some Fruitless Pursuits posts and Mission iPossible posts in the pipe and finished...both of which I have fallen behind on because of the abyss I find myself lost in again.

But then some things made me change my mind.

First, I realized that a list like that was actually kind of pointless. Because when I started to write it I realized that whatever I wrote, at least most things, could ALSO be placed on a list of things that I am thankful for, something I had also thought about doing recently because I know that my good friend and partner-in-crime Heather says she wants to do that for her upcoming birthday and it is also something she does quite often on her blog Little Wonders.

So what does that mean?


It means that perception is everything, doesn't it? Attitude is everything. And somehow, someway...I have GOT to figure out a way to control and manipulate myself (hee hee...he said 'manipulate myself!) to manage my perceptions. Because this entire journey, and the ups and downs of it, is murdering me.

Elaine, who writes Our Sweet Sophie, one of the people I discovered very early on in all of this, wrote something a while back, something that has stuck with me for quite a while. I think about it almost every day, as I struggle to keep my head above water.

She wrote this about her daughter, Sophie, whose behavior problems have been pushing her to the brink.

'We are living our lives the best we can. She tries our patience to the fullest extent almost on a daily basis. She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul. And at other times, she can make me so proud that I cry tears of pure joy.'

It is exactly, almost word for word, how I feel about my son Bennett. Maybe in regards to how I feel about my entire life.

So there you go.

There are a lot of good things in life to celebrate, a lot to be proud of. I know this to be an absolute Truth. But I can see that ever since Bennett had his evaluation, Jen and I, despite having experienced some highs (that I will talk about this week) are experiencing some of our worst lows in quite a while.

You do realize I can't stand this about myself right? It is hard when you deal with the ups and downs of what is, frankly, mental illness. And although it pains people who care about me to hear me say that out loud, I don't mind. It doesn't bother me to use that phrase.


So I have some depression, some anxiety, some other aspects of me that I have to 'manage' that make things harder for me living day to day than, say, John Q. Asshole? And those things, technically speaking, are classified as 'mental illness'.

So what?

There are a TON of people, and especially men, who are super embarrassed about stuff like that, thinking that somehow, some way, admissions of that kind of thing are signs of weakness. Or, God forbid, saying that you go to a Psychiatrist, which I do now and have off and on for years, because it will make you appear like you are as fruity as a nutcake and everybody will think you are crazy with a capital 'K'!

I believe the opposite. I believe it takes a great deal of strength to talk about those things. I think it takes courage to admit those things. I have a lot more respect for a man who is prepared to talk about the fact that he cried or he experienced this or that emotion or dealt with this or that problem than I ever do a man whose only expressions of emotion come when HE does or when his favorite wide receiver crosses the goal line.

To me? That is just not the way to show the world that you are made of quality ingredients.


FYI...I spent a good portion of last evening and half of this morning sobbing. And I mean the kind that makes your face swell and your head hurt. Nyah, nyah, nyah...

So that's where I am right now. Yeah...the over-enlarged holes left behind from the humungous tonsils are still healing, VERY slowly and yeah, times are REALLY hard right now in Casa de Lilly. REALLY.

But I need to get back to Blogging, somehow, because as several friends have pointed out, when I do NOT do it, my brain junk backs up, and since my Ulnar Neuropathy is something that prevents me from using my heavy bag (or even picking up a glass of water sometimes) to unleash some of my stress, I need an outlet.

And this be it.

OUT.

Tuesday, September 20, 2011

Lando the Lost


Calrissian said it best.

'Yes he's alive...and in perfect hibernation.'

Barely. If you managed to sneak a photo of me of late, I might actually be on my back, hands up, palms forward, with a grimace on my face, awaiting transport to Jabba the Hutt. I feel frozen.

Lots of reasons why.

And frankly, I am not really ready to take a bite out of it yet. You ever get like that? Any of you that blog I mean? You just have a whole shitload of stuff that you have that is jacking you up and you want to release it, but you just can't and until you do there just isn't anything you can really do in THIS space that will satisfy?

It's freaky.

BUT...I get e-mails. I even get calls now. People thinking I may be dead or something. Throat does feel like shit though I can tell you that. Went to the ENT yesterday, and he explained it to me. Gave me the skinny. See, the Lord did not see fit to give me exaggerated height, big feet or an elongated...sense of self. No, the only enlarged thing on me I got, other than my gut (well, actually, I think that one is MY fault) is an over-sized set of tonsils.


SO large, says the ENT, that the holes he cut are still in some earlier stages of healing from the 'inside-up' as he called it. Which is why there is still pain, still discomfort, still a fucked-up burned flesh taste in my mouth and a generally poor disposition.

And he tells me that it will still be quite a while for this whole shitty mess to heal up since, his words...'You have, well, HAD, some of the biggest tonsils I've ever seen.'

JOY.

And since I am feeling generally crappy about my pathetic existence and where I am in LIFE overall after having turned 44 yesterday, or rather...where I am NOT in LIFE...I am going to show why this WHOLE thing started in the first place.

Now, you don't HAVE to look...that's the beauty of it.

But I am going to post the photos of what I call 'The Thing' that was stuck in one of my tonsils for days until one afternoon, and I can't remember exactly when this was but it was maybe last winter, I used a bunch of menthol stuff and other techniques you do NOT want to hear about to get myself to gag 'The Thing' out.

If you click the images below, you will see it.

BUT THAT IS YOUR DECISION.






It was not totally soft, not totally hard either. When I squeezed it, it would not break apart. It had mass. The ENT, when shown the photos later, said it was a tonsil stone that had begun to get fungal/bacterial. And you do NOT want to know what the smell was like. It was...unfathomable.

It was this unholy terror that got me seeing the aforementioned ENT and on a path toward discovery of my LPR and the fact that I had these giant tonsils that, he told me when I first met him, had 'gills'. The gills just kept getting bigger, because stuff like 'The Thing' would get trapped in there, and stay small at first...then...grow...if I did not expel them.

Yup...welcome to HELL, Fish-Boy!!!

But the Gilly's are gone now. Hopefully that won't be happening again.

I will just be glad when I can yawn and it doesn't feel like someone is sticking a fist down my throat.

OUT.

Sunday, September 11, 2011

Bones


OK, so I am swiping again. I wrote this a little bit ago over at Mission: iPossible, as part of a post to get those folks caught up, but I wanted to share THIS part over here, because I know the two audiences aren't always synched up.

Like I mentioned there, I'm not done recovering from my Tonsillectomy. I still have some issues in my throat, some pain and some kind of discomfort and weird feeling and swelling on one side. Time to go March with the ENTS.


But the MAIN thing I wanted to be sure I mentioned over here is the news about Sam, one of the earlier Mission: iPossible iPad Recipients, who is recovering from a broken femur in the hospital. His Mom, cerealgirl007, who you can find over at her blog Cereal World, could use some encouragement, as she is stuck 24-7 all by herself over 14 hours away from her home at the Children's Hospital, and poor Sam is in traction for at LEAST three weeks and has a LONG road of recovery ahead of him.

We gotta show some support, that has to be BRUTAL!!!

Anyway, I hope you are all having a fairly good day, remembering the events that happened ten years ago in your own way.

My own thoughts I do have about 9/11, but I've just got too much to do today to write about them, and well, I may NEVER get to them, but maybe I don't need to. If I can, I will, and if not I'll leave it to those far more qualified than I.

OUT.

Tuesday, September 6, 2011

Mr. Clean

Got word from the Neuro-O today. The MRI was clean. No tumor regrowth as we had feared. I did not drive up there, we canceled the appointment late last week and decided to call in for the results, because I knew I would still be taking pain meds because of the throat and they said it would be OK.

For some reason they are insisting we still make an appointment. When I am up to it I am going to call and 'debate' that. There just is no real need this time, so I want to argue for a pass this time around. I need to rest, and Jen has a leg surgery coming up, there needs to be some kind of a 'One-Time' release or something.

Anyway, I'm not at 100% and will write more soon but wanted to at least share that bit of news.

OUT.

Thursday, September 1, 2011

It's ALIVE!!!


At the suggestion of a dear friend, it has been suggested that I get on here and let everyone know that I am alive and kicking.

I'm not doing much kicking. Or swallowing without pain. Or talking without aching. But I am alive, and each day gets a TEENSY WEENSY bit better.

Yeah...I am a little bit worried about tomorrow. I have to admit to that, and perhaps that mental element is also keeping me from writing as much as the physical elements are keeping me from writing. But as my dear friend pointed out, there are expectations that people have when you have blogs like this, and I have a responsibility not to leave folks hanging.


And so I am sorry for doing that.

And consider yourself un-hung for now. :)

I'll let you all know in a few days when I turn the corner into Much-Less-Pain-Ville.

OUT.