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.

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."

34. Meet Layla (Ozzie's 4-year-old sister)

33. Normal?

Recently, Oz Squad agent November posed a challenge to all members of Oz Squad. Write an essay that concentrates on a specific aspect of Down syndrome - an aspect that we advocates frequently find ourselves defending. I chose to focus on the idea of what it means to be normal, and what each person's life is really worth. I dug back to my high school grocery store days for inspiration, and ended up with another poem.

This entry, and others like it, are in the process of being collected for review. They will be posted on the Oz Squad blog in the near future. Please make sure you stop by and have a look.


Aisle 12

Click clack, click clack
A dollar ninety nine.
I'm stocking the shelves at the People-Mart
Pricing each one
With a plastic gun.
Judging them one at a time.

Click clack, click clack
A sea of human cans.
My task is to calculate each one's worth
By color by weight
By size and by shape
A price for each life in my hands.

Click clack, click clack
How can I determine the cost?
Shall I tally the value trait by trait?
Big heart or big brain
Are they worth the same?
I confess that I feel a bit lost.

Click clack, click clack
Am I willing, am I able?
To subtract for the scratches, scuffs and dings?
Dented or defaced
Will that change the taste?
What if a can's missing its label?

Click clack, click clack
Rows and rows of unmarked cans.
No way to account for potential or grace
No price is too high
I let out a sigh
Just what is the worth of a man?

Click clack, click clack
Pointless pursuit of prices.
Give up the charade, my futile trade
Close down the store
And lock the front door
For each man on the shelf is priceless.

32. Throw me the idol, I'll throw you the whip!

My blog is the recipient of the Golden Advocate Award, sent to me by Lisa at Finnian's Journey. Why is this special for me? Because Lisa's blog was the very first Down syndrome blog that spoke directly to me all those months ago as I slowly ventured out into the DS community. Finnian was born one week before Ozzie. As I first read Lisa's blog, I was able to see a life running parallel to my own, and it gave me hope and strength. So thanks once for the award, Lisa, but thanks a million times for sharing your story.

I am friends with an amazing group of bloggers, and I have no doubt all of them will eventually receive this award. But I would like to pass it along to someone who has used her blog to reach out - way out - to people who need it. Down Syndrome New Mama doesn't just write about how Down syndrome has touched her life (although that would be more than enough). She reviews books and products! She showcases brand spankin' new blogs created by brand spankin' new DS parents, and asks everyone to visit and say hello! She holds contests and giveaways! She writes brilliant essays about important and touching and personal things!

Is there anything she can't do? Well... probably, but let's not dwell on the negatives.

I'm not going to post all of the specifics about accepting this blog/passing it along. You can read all of the fine print at Rejenerations. I'm off to the afterparty.

31. Oz Squad's Official Blog

ozsquad.blogspot.com is up and running - come check it out. Members who are displaying Oz Squad badges on your blogs, I ask that you please link the badge to the Oz Squad blog.

30. Coda

I wrote/illustrated a poem today to mark the importance of the past year. I dedicate it to Ozzie.

29. One Year

In one minute, Ozzie officially turns one. I planned on writing a nice long post to reflect upon on the past year. I should have started writing it hours ago. But instead, I started clicking on all of my friends' blogs, reading their updates, commenting on their posts...

Maybe that's what I should reflect on.

I started this journey exactly one year ago, heartbroken and terrified and exhausted and confused and overwhelmed. And somewhat alone. You know that record-scratch scene, the staple of cheesy movies, where the guy walks into the biker bar and everything freezes? Well, one year ago today, that's what happened to me. Life froze. But damn if it didn't thaw.

Now, one year later, I'm involved in a wonderful community of people who are just like me. I haven't met any of them in person, but in a strange way, I know them. I know them very well. And they know me, like no one else can. I'm living a life different from the one I dreamed, but it's not a bad life.

I still don't know what my future holds, but when Ozzie smiles, I know it can't be all bad.

28. Party

We celebrated Ozzie's 1st birthday yesterday. I thought I would share a few choice photos. In the first, he discovers cake frosting. His love for that frosting ultimately resulted in the second photo.





We are packing up right now to go to the hospital for Ozzie's bronchioscopy, scheduled for tomorrow morning at 7:30. Oz, like many other babies with DS, had breathing/congestion issues. We're hoping the docs can identify and correct any places along his airway that may be blocked. He is also having tiny tubes placed in the tear ducts in his eyes so his tears can drain properly and we can quit having to scrape gunk off his lashes every time he wakes up from a nap. And he may be having tubes placed in his ears - his ear canals are so tiny no one has ever really been able to get a good look inside them. This is all fairly minor stuff - he just needs a tune-up. Wish us luck!

27. Housecleaning

As my son's first birthday approaches, I find myself looking back over the past year. Oz may be the one getting the cake, but in a way, I feel like I'm turning one right alongside him. Because certainly I'm not the man I was a year ago.

I recently glanced through my old blog posts and found a few that I started writing but never completed. They're just sitting there, abandoned for one reason or another. I guess I thought I would eventually finish them, but that's not going to happen - I have moved on. Still, I hated to just throw them away, so I stripped out some of the more interesting and meaningful words and phrases and made a text collage. In a way, I think a peek inside the jumbled-up head of a newcomer may actually be more interesting than just another old post. So here it is.

26. Liftoff

The people have spoken - let's light this candle.

Are you ready to stand up for Down syndrome? The Oz Squad needs you! Join our group of active bloggers and help educate the greater public. Give a voice to those who can't speak. We aren't here to bully, we aren't here to flame, we aren't interested in pushing a political or religious agenda. Our mission is to take a stand online whenever we encounter something cruel or insensitive or inaccurate about people with Down syndrome.

I want to stress again that I am not out to create a club of hyper-sensitive whiners. There is no whining in Oz Squad. But we have all seen extraordinarily insensitive content on Web sites, on blogs, on YouTube, etc. And when someone is clearly asking for it, I'm ready to drop some bombs.

So here's how the Oz Squad works. First, send me your email address, along with your name and the name of your blog/Web site. Don't post this info as a comment - email it to me directly. I'll create a private email list of members, and at some point I'll also create a permanent page for the club with links to all of your blogs. When you see something online that you think we all need to know about it, send me a link (and maybe a brief summary). I'll check it out, and if I think they need to hear from us, I'll send an email to the entire group and we can start commenting in full force. Sound easy enough? Spread the word.

UPDATE: Oz Squad now as an official blog. Visit ozsquad.blogspot.com for the full details.

25. Call to Arms?

A few days ago I was offended by a post on a random blog that I discovered via the Blogwatch section of my other site, downtownds.com. It wasn't anything horrendous, just a callously and poorly written post about strangers on a city bus in Calgary (read it here). For whatever reason, that particular post really irritated me, and I posted a comment to let the author know. After my comment, a few other readers joined in and let him know that they felt the same way. The next day, the author posted an apology. He apologized to some of us individually.

And that tiny little victory got me thinking. In the past year I have made the transition from "regular guy" to "DS dad/blogger/webmaster." And I'm ready to start pushing a bit deeper into "DS advocate" territory. But I need your help.

I'm thinking about forming a watchdog group of active DS bloggers. Down With Oz has helped me meet some brilliant and passionate DS parents. It amazes me how quickly info spreads between all of us, and how willing people are to offer support and advice whenever they can. I would like to find a super easy way to focus and aim that energy with precision. Sort of like a giant DS laser.

So here's my working idea. I would invite you DS bloggers to join an email list. Then, I would ask you all to keep your eyes open as you surf the Intertubes. If you see something really offensive, you would email me and let me know about it. I'll check it out, and if I think everyone needs to know about it, I'll email it to the group. I'll come up with a simple tagline so everyone can always recognize a call to action. And then we start commenting.

I want to be clear that I'm not out to create some bitchy, whiny, hyper-sensitive group of bloggers who are looking to pick a fight with the world. What I'm interested in doing is educating the public, making sure the rest of the world knows that my son is a valuable person, and reminding others that cruel, ignorant and insensitive remarks about mentally handicapped people will not be tolerated. I don't want to waste my time on the really small fish - I won't lock and load every time a 16-year-old blogger in Idaho uses the word "retard." However, if that 16-year-old is the editor of his high school newspaper and uses that expression in a column, I will consider calling him out for it.

I have no interest in using this group to target/support a particular political group. I'm also not interested in pushing any religious agenda. And I won't send you a dozen emails every day. Most days, you probably won't get anything from me. I'm guessing it may be more like once a week, or maybe even once a month. That way, when I do write, you'll read it. Also, don't get mad if you tip me off to something and I don't email it to everyone. I'll be using my own judgment.

Does this seem worthwhile? Reasonable? Interesting? Is everyone already involved in a group like this and I just haven't heard about it yet? Do you already get too many emails? I need some feedback here. I'm really trying to decide whether I should organize this, and obviously I don't want to invest time in it if it wouldn't be useful to anyone. Please pass this post along to all of your friends so I can reach out to as many people as possible.

After you other brilliant bloggers give me some feedback, I'll write a follow-up post. I'll either give you instructions for signing up/participating, or I'll scrap the project.

Also, if not that many people are interested in this, I have a plan B that involves buying a van and a dog and driving around solving mysteries. We could do that with a much smaller group.

UPDATE: If anyone has come directly to this entry on my blog, be sure to read the newer post that followed this entry. Oz Squad is a go. Email me your contact info - don't post it in a comment - and I'll add you to the list.