Monday, December 13, 2010

Dear Santa


I know your busy...well, actually, who are you kidding, really? You have a bunch of physically disabled people busting their asses 364 days a year, probably with no breaks and no vacation and you work ONE NIGHT, so the likelihood of you being THAT busy is probably not that high.

Besides, have you looked at yourself lately? You're frakkin' FAT. And I don't mean few-extra-pounds. I mean ginormous gut, probably headed for a heart attack type of fat. Hey wait a second, you can't have a heart attack, can you?

You have some kind of special immortal-style super-powers or something.

Still, would it kill you with all that extra time you have to get on a treadmill?

See, there I go, starting my letter to you to tell you what I want for Christmas with bitterness and anger.

Again.

Sorry about that Santa-Dude.

But can you blame me, really? I've spent my life sending these things in, and you've spent your life basically letting me down. Lather. Rinse. Repeat. My guess is that you are hoping that if you keep blowing me off long enough I'll just go away.

The sad fact is that's true. As I am finite. And you? You're not.

Anyway, here's my list for this year, such as it is.

I'd like you to make my son Bennett stop injuring himself when he gets upset over anything, which happens a lot. See, he can't communicate very well, and when he gets frustrated, he goes a little crazy. Sometimes a little, if he can't express what he wants to eat, sometimes a lot, like when my wife leaves the house without him.

During those times, Santa, you've never seen anything quite so...disturbing, from someone who under most circumstances is so sweet and gentle and wonderful.

Anyway, I'm tired of trying to protect what's left of his brain when he slams his head into the floor or wall, and I'm tired of wincing when I'm looking at the bruises up and down his arms from when he bites himself. And he doesn't have that much hair to begin with, and when he pulls it so hard that some comes out, it isn't helping.

So can you make that stop?

That'd be swell.

And while we're on the subject of Bennett, I know you can't really make him talk, so I won't ask for that, but would it be too much trouble to get him to start having a relationship with me again? He used to, you know. Now, I'm just not that important to him. Not really.

Even if you have to pull a Genie in a Bottle type of a trick, maybe turn me into a Euler's Disc or something, so he'd have some interest in me, I might be cool with that, cause I'd rather have that than to be ignored, and I'd REALLY rather have that than have him push me away when I go to hold him.

That just hurts. And I think my wife and 'normal' kid are sick of seeing tears in my eyes. I would be.

I get the fact that he isn't going to be saying 'Hi Daddy' like he used to, but hey...at least I have that on digital video and I can watch it again and again, whenever I want, and that's just as good as the real thing, right? So why bitch about it?

I guess I just need to learn to be happy with what I have, huh? Pretty hard though, Big Red, especially when you walk around the mall and see so many other families having so much fun together, and you know that yours is hanging on by its fingernails.

Which reminds me. I need you to help bring a little joy to my spouse. See, I can see in her a sadness like I've never seen before, and I don't have the power to just wave my hand and make it go away. I don't know how tight you are with Mrs. Claus anymore, but I ache for Jennifer when I see her in so much pain, when I see how little there is I can do for her.

I never wanted this for her. As her husband, all I want is to see her have a happy life, a contented life, a life as free as possible from doubt, from worry, from fear, from anguish, from sorrow. Her life right now is defined by those things. But I know you have some connections with Father Time (I watch those stupid Rankin/Bass stop-motion shows) so maybe you can help.

See, I knew this December was going to suck in all kinds of ways. Probably going to be the worst one ever. Why? Why this one more than last year? Because last year we were in surgical recovery. Reality had not really sunk in.

We had no real expectations.

But man-oh-man, we had them this year. We thought things were going to be a LOT different. We thought Bennett would be so much farther along. We did not expect him to be so far behind, so delayed, so self-abusive, so hard to reach. We had hope that things were going to be a lot better for him.

That's the key. We HAD hope. That hope, as each month goes by, gets picked at, bit by bit, and soon I fear there will be little left but a grim acceptance that things are gonna probably be very difficult for Bennett his entire life.

That's a bitter pill to swallow. And it's a dangerous one. Because you never want to stop fighting, stop pushing, stop doing everything you possibly can for your boy.

But I'm not suggesting that these things would cease. In fact I'm not sure what I'm suggesting...I'm not sure of a lot these days. They're dark days, and I can't see as well in this kind of thick fog.

I guess what I mean is that, if you have any way of giving her some glimpse of Bennett's future, some glimmer of...something...that he might move past some of where he is to someplace better, that he might exceed some of her fears, and mine too, that his life might not be this...SEVERE.

He deserves better than this. He's just a boy, he didn't do anything to anybody.

So please Santa, give her something...ANYTHING...to set her mind at ease. Show her...show ME...something.

Lastly, there's Carter. He's our older son. Maybe we should change his name to Norm, huh?

Santa, this one might be a little tougher, but I need you to send me a device that enables me to freeze time in, let's say...hmm...how about 30 minute blocks, maybe once a day? Would that disrupt Space/Time to the point where we all end up back in 1977 living with the DHARMA Initiative?

See, Carter gets the shit end of the stick most of the time. And that just sucks. We spend so much time on all the aforementioned crap that we don't have enough time to devote in a day to Carter, and when we find the time Santa? Holy crap are we wiped RIGHT the 'F' out. So even when he GETS us, he isn't really getting the 'good' us.

So if you can get me that Time Thingamawhatchamahickie, I can hit pause while Carter is inside the Time Bubble (cause they all make that) with me, and he and I can have some quality Dad/Son time without interruption and Time will simply stand still around us.

It'll just be me...and him.

Nothing else hammering away at me.

And occasionally I'll let Jen use it too.

Is that a lot to ask? I don't know. Maybe. I guess if I can't have that I'll take that pony. But...you've been screwing me me on that one for 43 years, why should this year be any different?

You know, now that I think about it, you and God really should get together sometime, have a beer. Or in your case Nog I guess. I figure the two of you have a lot in common. You both get a ton of requests from a lot of hopeless people like me who feel like they just sit here with their dicks pissing into the wind.

Totally foolish and utterly helpless.

No answers. No solutions.

Just a face splattered with piss and more anger that you can shake a candy cane at.

But that's not your problem, Santa, and it certainly isn't the big G's problem either...it's mine. I get it. And I know that it is up to Yours Truly to fix it. Just wish I knew how. The sad thing is they don't make any manuals for this kind of life. Though come to think of it...they didn't make one for the life I lived before this one either.

Well, Big Red, I guess that's it for this year. Take care, brush your hair. I don't hate you, you know that right? You're still my favorite Christmas Icon. I'm just angry. Angry at the way things have turned out. And sad...sad to see so many people in so much pain so much of the time. It gets to me.

Always has.

Probably always will.

Don't worry, I'll be leaving cookies out on Christmas Eve, just like I do every year.

And YES...they are REAL chocolate chips this year, I promise. I swear...I do the ExLax thing ONE time and you never let me forget it.

Sincerely Yours,
Ken

OUT.

14 comments:

  1. Really beautifully written, Ken. We'll be thinking about you and your family this christmas.

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  2. Nothing to say other than well put. x

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  3. This is exactly why I'm so grateful for blogs. Especially yours.

    Maybe Santa will pay us both a visit this year. ;)

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  4. Well, where do I begin. This is without a doubt one of your best posts to date. I'm going to write something on my own and address something that you asked me a while back (about the experiences that I've had with my brother throughout the years). Hopefully there will be "something" there that might help you through your shitty month of December.

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  5. Wow, nice. Sad, but nice. I hope that putting it out there helps release it a little bit. We are struggling this Christmas too. KC is regressing, and increasingly violent. But I still have a lot to hold on to, and I wish that for you too. I hope Santa surprises you this year.

    Karen

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  6. I would love for some of these requests to be filled for you and your wife...thinking of you guys.

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  7. I hope and wish Santa gives you all of that and more this christmas.

    Anita

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  8. That was written in true Ken fashion.Straight forward honest,witty,beautiful and yet,heart wrenching.

    You know,if I had the connection,I would see that all your Christmas wishes come true.

    I have a major list going myself for so many precious little ones and their struggling families and a few little tid bits thrown in there for the wee Cindy Lu Who in our houese.Written in duplicate for not only Santa but the other Big Guy as well.

    Something tells me that that ginormous list can't quite be filled completely but I'll keep wishing and hoping and praying ... for all of us.

    Sending out love form California... an extra dose for your wife.Mommies hearts break in just a certain,pain to our core way, when we can't fix it all.This I know all too well.

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  9. Wow.

    Later, when you are collecting your blog posts for the editor of your book (you know -- the one for dads of special needs kids that you will probably subtitle, "Funny, I Don't Feel Special...")this one will go in untouched by editors' red-lines.

    I hope your wish list is answered this Christmas. If you only get socks, I'm gonna be pissed.

    Great new pics in the header...

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  10. In times like these, years like these, a lifetime like this, well, I send you love and empathy, the true kind that doesn't heal anything and perhaps doesn't help anything but it's there with you, with Jennifer, with Carter and with Bennett. You are never alone, and that's about the only thing you can feel certain of.

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  11. Why yes I did have some FusioNog. Would you like me to send you some? :)

    By the way, I wanted to respond to one of your last comments on my blog, but Austin pulled me away. A shorter version...Thank you. And here's to us sucking it up and fighting through it! May we both find that joyful moment that makes us forget how sucky things are -if even for just a minute.

    Now. Go get yourself some FusioNog!

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  12. What I love about you is you are so real. Speaking as someone prone to depression myself, I think it is true that depressives don't shy away from reality. They face their demons head on. It took me quite some time to realise that most people do denial to some degree. I do not judge them for that and am even envious of them for it, it can be a very handy tool for coping with extreme life situations. However for me it is not an option. I find it can be a very alienating place..this place of seeing things as they really are...when you're surrounded by people who don't it can make you feel quite mad. So thankyou for being real and sharing your emotional honesty. Wishing you and your family well on this difficult path you find yourselves.

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