40. The Name Game

I have been asked to explain the origin of my children's names. So let's tackle these one at a time.

Let's start with my daughter, Layla Opal:

Why Layla?
Are we big Clapton fans? No, not really. We had a really hard time picking a first name for Layla. I wanted it to be uncommon and slightly exotic. Dina and I went through every name in the book, and we finally agreed that we both liked Layla. Dina liked it because it has Arabic roots, and she is part Syrian. Layla is traditionally spelled Leila, but we worried that she would be faced of a lifetime of people mispronouncing it as "Lye" la. So we decided to use the Clapton spelling to spare her that irritation.

Why Opal?
Because it is – and always has been – my favorite stone (and it's Dina's birth stone). For the life of me I can't figure out why opals aren't worth more than diamonds. Actually, I guess I do know (it's called the De Beers cartel) but we won't get into that right now. Anyway, I wanted my daughter to have some sort of real thing associated with her name. I used to have a friend whose surname was "Wolff," and I always thought it was cool that he had an instant motif built right into his name. I like names like River and Rose for the same reason. In that spirit, Opal worked quite nicely. It's unusual, exotic, and, when combined with Layla, results in an enchantingly lyrical name. Unfortunately it's a melody that grinds to a screeching halt with the addition of "Niblock." But I can't do anything about that.

And now my son, Ozias Andre:

Why Ozias?
This is a weird one, I know. I take full responsibility. I wanted a son named Oz. I love the name Oz. It is described in one of our baby name books as having a somewhat magical quality. I think it's the coolest guy's name ever. But we didn't really want to name him Oswald, or Oscar, or Ossie. We tried lots of combinations of "O" first names and "Z" middle names, so his initials would be O.Z. But that didn't work either, because we didn't like any Z names. And then finally I stumbled upon the name Ozias. It was mentioned briefly in a baby name book, not as on official entry, but in a listing of names similar to "Oswald." And I couldn't get that name out of my head. It's a biblical name - it means "strength of God." It's a king's name. The more I said that name, the more I liked it, and the more I liked it, the more I realized that no other name would do.

Why Andre?
Because it's my middle name. It was my grandmother's maiden name. A connection to a chapter of my history that, because of unfortunate circumstances, I know only from stories and photographs. So, along with his extra chromosome, Ozzie forever carries that connection, too.

I will make one footnote about Ozzie's name. When he was born, I had a brief crisis of conscience. I wondered if I might be doing him a disservice by giving him such an unusual name. I had wanted to give him a name that would help him stand out from the crowd, but when I learned of his diagnosis, it was obvious to me that standing out would never be an issue for him. I wondered if his name might just make him stand out even further, perhaps in a bad way. Yeah, I thought about it - for about five minutes. For the very first time, I was forced to decide whether to treat him like a normal child, or treat him differently because of the Ds. And I made my decision - I would be damned if I would allow Down syndrome to strip my son of his birthright.

So I have my Oz. My Ozzie. My king.

And I will now tag Lisa at Genetically Enhanced, because I know she has an interesting story about Sheridan's name that she is just DYING to share. So get busy, Lisa. Unleash your inner geek.

39. Click

38. Is This Thing On?

Today I want to write about something that Down syndrome has stolen from my life.

I'm a funny guy. Maybe that's debatable, but I think most people would agree. I enjoy funny movies and funny stories and funny songs and funny jokes. I used to be an aficionado of stand-up comedy. But since Ozzie's birth, the laughs don't come as easily. Why? Because stand-up comedy has become a curious mixture for me - equal parts laughter and anxiety. As I watch, I anxiously anticipate the next retard joke. I don't even like to watch stand-up unless I'm alone, just to avoid uncomfortable situations. And there's nothing funny about that.

I used to think this was all in my head, but this new reality was recently driven home like an arrow through my head (one of those joke ones) as I listened to the podcast of my favorite comedian. He went on an extended jibe about how awesome it would be to pretend he had a Down syndrome kid so he could get out of work whenever he wanted:

"I gotta leave early today."

"Why?"

"LIttle Johnny - my little champ. He's such a fighter. I just need to be there for him..."

Hardy har har - this went on for several minutes. Apparently my life is extremely funny. It was nice of him to point that out - now I don't feel the need to tune into his show to have a laugh. I don't listen to him any more. And I hate that - I really do - because he really was my favorite comedian. I still think, deep down, he's a decent guy. But that bastard owes me a big, fat apology. Hear that, Ace man?

You may notice I didn't mention him by name. And the reason I didn't is another sad fact of reality. If I did, there's a good chance his fans would take notice and start leaving offensive comments on my blog. They would tell me to lighten up, it was just a JOKE.

No, I won't. I can't. Down syndrome stole my sense of humor. A portion of it, at least.

Eddie Murphy, in his prime, used to pepper his monologues with "faggot" jokes. Andrew Dice Clay poked fun at "midgets." Hardy har har. I laughed along with what I thought was the rest of the world. But the rest of the world wasn't laughing. Not everyone. The faggots and midgets sat silent, along with the retards (and the parents of the retards).

I wish, one day, we could all enjoy stand-up comedy.

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.

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.