Thursday, September 17, 2009

37. Through the Looking Glass

I feel an especially powerful emotional attachment to other parents who have a child with Down syndrome. It's an instant connection, as if we know secrets that others have no way of sharing. Sort of like the Illuminati. And lately I have been thinking about why, exactly, I feel this way. What are the roots of this unspoken Ds Code? It's something I haven't seen other people explore, and maybe it's time to reveal a few of these hidden passageways so others have a better understanding of our lives. So you other Ds bloggers can think of this post as something that's aimed more at the general public, because I won't be saying anything you don't already know.

The first part of the Ds Code is mental. All parents who are handed this life, no matter the circumstance, are plunged into a period of forced introspection. These are dark days indeed, where everything feels sort of numb and surreal. A Ds diagnosis is one of those BIG moments, for many people it's the most powerful moment they will ever experience. You are forced to reevaluate your life - what it was, what it is, and whatever it will be. You have to make sense of things, and that requires lots and lots of thinking. You have to dig deep and shuffle through some really disturbing thoughts and feelings. It's not a fun process, but it is an enlightening one.

The most painful part of this process for me was evaluating my own past. I wasn't ever the most outgoing guy, or the most popular, or the most handsome, or the most athletic, or the smartest, etc. Like everyone, I cursed my faults and wished I had been blessed just a bit more in every department. And so Ozzie's arrival brought waves of guilt. Guilt for my own shallowness and selfishness. Guilt for the awareness that I could have done so much more with what I had. Guilt for the realization that I had never really appreciated the gifts I was handed by the roll of Fate’s genetic dice.

Ozzie is a constant, glaring reminder that not everyone is as fortunate as I am. Some people, through no fault of their own, have a much harder path to travel. And damn, life was hard enough for me - I can't imagine traveling in Ozzie's footsteps. It’s crushing and overwhelming to imagine walking into my old high school in his shoes. This is a painful truth, and it's a mental revelation that I'm certain is universal among Ds parents. We share a different perspective – an appreciation for things others take for granted, a special empathy for hardship. Until you live it, you can never really understand. You other parents out there, family and friends - you think you can, and I know you try your hardest, but I promise you just can’t understand.

Another key part of the Ds Code is the stares. The ones that are now directed at my family whenever we are out in public. I feel like I’m in a fishbowl. I’m a private guy, even though I’m a blogger. I’m happy to pass right along through life as an invisible man. And that’s impossible now, because everyone, everywhere, takes a second look. And I don’t know what they are thinking, but I can guess. And whatever those strangers are thinking, good or bad, feels like an intrusion. It’s a constant and unending phenomenon, and I know it will only intensify as life goes on. I don’t like it, I didn’t ask for it, and I would gladly give it away if I could. By "it," I don't mean the Ds, I mean being the object of other people's attention.

I now know what it feels like to be a celebrity. To just want so badly to stand in line at the checkout without the person in front of you turning around to talk. I think people feel the need to give extra attention to show how kind they are. They don’t realize that EVERY person in EVERY checkout line gives this extra attention. I appreciate the kindness, but sometimes I just want to buy a pack of socks, anonymously, and go home.

Most people just don’t really understand this phenomenon, but I know all Ds parents do. It’s a strange and powerful thing to have in common with someone.

I’m sure as Ozzie grows older I’ll stumble upon other universal truths to add to this post. If any of you other bloggers have thoughts of your own, please share them in the comments.

Wednesday, September 9, 2009

36. Normal (Part 2)

I'm just a normal guy. Just your everyday, average, long-haired Eagle Scout. Must be a million guys just like me. You know, straight guys who hate sports, have a passion for typography, color and design, and who have a collection of custom, handmade knives? And who love the Muppet Show?

My son Ozzie, he's not normal. Not according to the standard rubric. Mind you, he doesn't know. From his perspective, looking through those big, beautiful almond eyes, I imagine he feels quite normal. I'm not sure how I'll ever even explain the concept to him, and I hate that I have to do it at all. But he will likely have questions for me some day, questions about why he isn't quite like others. And I hope, when that time comes, I have figured out an answer.

Honestly, I'm growing tired of the whole concept of normal.

Normal - the pursuit of normal - is a fool's errand, anyway. We all think we want normal, but when we have it, we want something else. Something different. That's why people wear jewelry and customize motorcycles and avoid tourist traps and tweak their orders at restaurants. Quite often, normal isn't very interesting.

And normal is in the eye of the beholder. What's normal in Zimbabwe isn't normal in Iceland isn't normal in Australia isn't normal in Utah. There's a guy who walks around the street in front of my office every day wearing a giant hat with flowers on it and mismatched, striped socks. It's funny to imagine him waking up in the morning, slipping on those socks, plopping that stupid hat on his head - it's a routine that must seem very normal to him by now.

You really want normal? Really? Fine, you can have normal. Crank the Beatles in your Camry while you drive to the ice cream shop to have a vanilla ice cream cone (not a waffle cone or a sugar cone, just one of those normal, tasteless ones). While you're having your treat, you can think about how much you dislike Tiny Tim, flying saucers, stilettos, David Lynch movies, Antarctica, Pop Rocks, llamas, Pac Man, April Fool's Day, Pluto, the pyramids, mohawks, white tigers, extreme sports, Japanese robots and Leonardo da Vinci.

Me and Oz, we'll be having mint chocolate chip.

You know, I once drove hundreds of miles out the way just so I could make a left turn in Albuquerque (note: if you don't get that, you didn't watch much Bugs Bunny). I realize that was not normal. But somehow, even as my iPod shuffles through Italian rock music, Britney Spears, and the Wu-Tang Clan, my life - my life with Oz – feels perfectly normal to me.

Monday, September 7, 2009

35. A Sister's Wish

Yesterday morning we ate breakfast at an outdoor cafe and sat next to a fountain. Layla asked for a penny, thought for a moment and threw it in.

"What did you wish for, Layla?"

"I wished that my brother would learn to walk."