Friday, December 11, 2009

44. Eruption


Lately, my brain has been rattling with a jumble of thoughts and reflections that I have not been able to organize into anything resembling a meaningful post. So forgive me if what you are about to read seems disorganized. I'm trying to collect all of these little ideas, pound them into submission, and mold them into something at least semi-interesting.

I keep thinking about the impact Ds has had on my life and on my worldview. How suddenly and severely it changed my perspective on so many things. To me, Ozzie's surprise diagnosis felt every bit as dramatic and unexpected as the eruption of Mount Vesuvius must have felt to a Pompeii farmer. I scarcastically joked in an early post that the whole surprise Ds experience wasn't all bad. Looking back now, from a safe distance, I know that to be true.

What if a stranger walked up to you one day, randomly, and offered to reveal to you the great mysteries of the world? The answers to the big questions. What is the meaning of life? What is true love? What am I really made of? What is my purpose? What does it all mean?

Just what would you be willing to give up to learn the answers to those questions? What if the stranger told you that the price of this knowledge was a staring contest with true terror? A glimpse into the deepest, darkest place imaginable – the mouth of Hell. Would you still take his offer? Could you summon the courage? Would the good outweigh the bad?

And what if he gave you no choice, what then? What if you were dragged away, kicking and screaming, and forced to take this test? When it was over, when you had survived, would you consider yourself worthy of the knowledge you now possessed?

I sometimes feel like a random guy who took the test. I didn't ask to be tested, I never expected to be tested, and now that it's over, I'm just trying to make sense of my life. Things look different now. Not in a bad way, in a profound way. Sometimes in a wonderful way. And sometimes in a painful way.

For example, I'm a huge film fan, and every now and then as I'm scanning through my collection of DVDs I come across an old favorite that seems, now, like a relic from a time in my distant past. Edward Scissorhands. Frankenstein. Forrest Gump. The Elephant Man. I'm not sure I can watch them anymore, at least not yet, and perhaps not for a very long time. I certainly can never again watch them with my old eyes, and I'm worried what my new eyes will see. Sometimes I miss those old eyes. Maybe that's just part of the debt I still owe for my hard-earned knowledge. But I guess, in the grand scheme of things, that's not such a huge price to pay. My apologies to Johnny Depp.

So here I stand, a fairly reserved, private and regular guy. A random guy with a profound new perspective, just trying to find my way through the falling ash. With me walk scores of other random people, many of whom blog about their experiences, too. Somehow we have all become accidental advocates, publicly and painfully growing into our new roles online. And just as we begin to make sense of our own lives, we find ourselves helping other new parents out of the darkness and into the light. That's a strange place to be, and the pay stinks, but damn if it doesn't feel worthwhile.

My point? I don't know if I have an overall point (I told you this would be a bit disorganized). If I'm forced to have one, my point is that a year and a half later, I'm still sorting things out. I don't know, maybe I'll be sorting things out forever. But I would like to think that at some point I'll be able to wrap my brain around all this stuff. And on that day, I'm going to have a couple of beers while I watch Edward Scissorhands.

19 comments:

Hector and Jennifer Varanini Sanchez said...

You are awesome Dan!

greenmama said...

I always look forward to your new posts as they are always positive and well written. This has been a hard journey but your blog has helped me tremendously.
Thank you

Lisa said...

I'll watch Edward Scissorhands with you.

onlywhoiam said...

yeah. what they all said.

you are so, so right.

perhaps you should throw an Edward Scissorhands viewing party? I'll bring beer to share...

Ruby's Mom said...

It was nice to read how you feel about some of the movies you watched before you had your child with Ds.I tried to explain to my husband why I couldn't watch Mr. Bean anymore and I don't think he understood.
Send me an invitation to your viewing party ;)

Sasha said...

Oh I used to love that movie. I am still new on this journey. It's almost like you have different glasses on now that allows you to see things that only a selected few see. Who knows I am still trying to figure it out too. Thanks for sharing.

Yo Mamma Mamma! said...

You captured so much so well, Dan.
I just recently said that I feel that the magnitude of my response to the diagosis for me was greatly out of proportion to what it has actually been in my life, given the perspective of time.

But that act does change you, and everything about how you see the world.

Consider yourself warned...Rudolf the Red Nose Reindeer is one to add to your changed list...

TUC said...

For just thinking out loud, you put it really well :-)

We have been smelted, refined... but damn if that didn't hurt real bad.

Yeah, and I agree, skip Rudolph... all through it I was thinking, "why am I letting my boys watch this crap?" Oh, right because we are the Santa Claus culture and I would be a mean mom if I turned it off...

Hector and Jennifer Varanini Sanchez said...

Yep, Rudolph is on my list too...darn it!

DownTownDan said...

Man oh man, I didn't even think about Rudolph! Dang.

Dovic said...

Why Rudolph? Because he was left out (I might have my reindeer stories wrong?)

Dan, love your posts. Pure and simple.

Kinda like watching/hearing the pounding of a big strong heart under a closing superficial flesh wound. Pounding even harder because of the wound I guess.

And you articulate so well how both feel. And give them their appropriate levels of measure I think.

And that is very cool :)

Lance Boldt said...

Oz is lucky to have a devoted father who has such a good perspective. Entering the world of Ds over 18 years ago, I've certainly seen all levels of engagement from others. I predict you'll be happy with your choice.

6 months after Josh was born with Down syndrome, I attended my first parent group. I was touched by the struggle people were having with “why?” I went to bed with a heavy heart and awoke with this story. I hope you enjoy it.

http://tinyurl.com/secretjourney

DownTownDan said...

Thanks Lance, wonderful story.

Anonymous said...

Daniel,

I used to just love "Forest Gump" and "Edward Scissorhands" but I can't watch them anymore, I thought it was just me. In fact, so many movies just hurt too much to watch, that is why I stick to reruns of "Frazier". But, like all of your fellow bloggers, I really do like my "new eyes", I just wish I had been blessed with them sooner and less painfully.

Love,
Mom

Jasmine said...

I second Lisa's statement. We'll all watch Edward Scissorhands with you.

You're a neat guy.

Take care my friend.

Jasmine at Windmills and Tulips

Sally said...

My husband and I watched Milk recently and although it's not directly related to disability of any kind there is a speech near the end where Harvey Milk stands up not just for gay rights but human rights including gays, seniors and the disabled. We both just sat there with tears streaming down our faces. We still watch movies (when we have time) but we cry alot more.

There's a page in Martha Beck's 'Expecting Adam' where she is walking around with her pregnant belly contemplating his disability which she has just received news of. Suddenly she says "Why not me?"

I've been trying for the "Why not me?" attitude. It's tough sometimes. It's worth a blog post of my own if I ever get around to it.

Thanks for your words Dan.

Laurie said...

Very good, Dan. Very, very well said.

Ahh, I love what your mom said:

"But, like all of your fellow bloggers, I really do like my "new eyes", I just wish I had been blessed with them sooner and less painfully."

: )

Kelly said...

Your words hit home once again Dan. Always enjoy your posts. I like to think of it as our eyes are now wide open rather than 1/2 closed. Don't want to miss a thing on this wonderful journey.

By the way, you can never have too much beer!

heather said...

I loved this post as well. I just had to add one more movie--There's Something About Mary. I laughed so hard when I saw that one in the movie theater but don't even dare watch it now.