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.

24. Common Thread

Hi everyone. Just in case a few of you still haven't heard about the T21 Traveling Afghan Project, I wanted to publicize it here on Down With Oz.

Step right up folks! Get a gander at the craze that's sweeping the nation! It's circling the globe! What is it, you ask? It's bigger than a Slinky and warmer than a Hula Hoop. It's the T21 Traveling Afghan! TRAVELING, I says!

This little beauty is the brainchild of Chandos Field, a thirty-something mom in Wisconsin. Chandos had a vision, and boy oh boy was it a doozy.

Step 1: Crochet an afghan. And crochet she did.

Step 2: Offer to send it to other families touched by Down syndrome. Include a journal so families can write about their experience and log the afghan's short stay in their home.

Step 3: Watch in awe as a flood of families ask to take part in the project.

Well fellas, she did all that and more! Seems some kids loved that afghan so much they didn't want to part with it. They say it's the cat's meow - it's the greatest thing since sliced bread! So now, poor little Chandos crochets a new afghan for anyone who asks! Her heart's too big, I tells ya!

Meanwhile, the afghan is racing across the great US of A. The goal is to hit all 50 states - even the crummy ones! And then it's going over the pond, to places that AREN'T America! Chandos' afghan is going intercontinental!

And after that? Well boys, I have it on authority that Chandos is secretly knitting a rocket. That's right, the T21 project is going intergalactic! And if you buy that, I've got some swampland for sale in Florida.

So step right up, folks, it's not too late to get in on this amazing offer! She's done all the work for you - just visit her Web site and sign up now!

Thanks Chandos - you are a class act. I can't wait for the afghan...

23. Photo Update

Several readers have asked for an updated photo of Oz. I'm here to please:

22. Assumptions

Today I read a post on another blog (the fabulous "Finnian's Journey"), and I had so much to say about it that I just decided to address it with a post of my own. The subject: how moms and dads handle strangers' questions about their child's development. You can read the post here.

Last week I had a similar experience. I was talking to someone I had just met, and she was asking about my job and my family – all the routine, small-talk stuff. Eventually the fact that I have a ten-month-old came up in the conversation, and her eyes lit up. And as they did, my tension level began to rise.

Here we go, over the cliff...

"Oh, ten months old. Such a wonderful age! Let's see, I bet he's crawling all over the place by now. Maybe pulling himself up, right?"

If my life was a movie, this scene would have been playing in slow motion. And as she spoke those words, the camera, fixed on my face, would have captured the transition from smile to thousand-yard stare. Because at that moment, my mind was shifting into overdrive. I was playing a mental game of "Choose Your Own Adventure," trying to size her up, trying to decide how much to tell, what to leave out, how to change the subject, and finally, how to end this conversation.

After a pause that was just a little too long, I answered:

"He's working on it."

Exhale.

She said something else about how she loved babies at that age, maybe asked me another question - I don't really remember the details because I had shut down by that point. And here's where being a guy helped quite a bit: I realized that I had just played the "uninterested dad" card, and she had bought it.

End of conversation.

It hurt a little bit, because I know her impression of me was probably not a great one. But in reality, I was operating in survival mode, trying desperately to protect us both from a very uncomfortable exchange. She had no idea how hard I was working to guide her safely through the minefield.

What can anyone learn from this? Well, probably nothing. She didn't do anything wrong. But please be aware that innocent exchanges like these aren't always so innocent to the other player. Your assumptions can actually be really intrusive and really unwelcome.

And that stoic guy with the thousand-yard-stare? He may just be the most loving dad on the planet.

21. Redesign

You may notice that this blog suddenly looks different, and this post is to explain why and to clarify a few things to anyone who may be confused. The original green "Wizard of Oz" theme was something I came up with in the days after Ozzie's birth. I slapped it together, called myself "The Wizard," and got to work. But I never really liked the design, and I don't particularly like wizards, and it always kind of bugged me.

As I was building Down Town, I planned on ditching this blog altogether and just moving everything over to that site. But it became a huge hassle to do that. I tried - I copied the content over to the new site, and I called it "Life with Ozzie," (a name that's a bit more straightforward than Down With Oz). But I ended up with a really crummy version of a blog. I'm finally just admitting that it makes more sense to manage my blog through blogger.com.

This evening I redesigned Down With Oz to bring it more in line with the design of Down Town, and I changed my stupid "Wizard" moniker to something that actually makes sense: downtowndan. That name may be stupid too, but I think it has sort of a cool blacksploitation vibe, which you must admit is better than a magical-wizard-nerd vibe. I also added a blogroll and a followers link and set up email notification for comments, etc. In other words, I finally got serious about this blog. Hope you like it.

Oh, one more thing. Anyone can now comment on this blog - you don't have to log in or be a member of blogger or anything. That's a gift for my internet-challenged family.

20. A New Journey Begins

Hi again everyone. I haven't posted in awhile, but there's a good reason this time, and most of you already know about it. Last weekend I launched Down Town (www.downtownds.com), a Down syndrome news and information site that I hope will grow into a huge and wonderful resource. I've been working quietly on the site for months, along with an animation that explains Down syndrome to children. I'm proud to say it's up and running nicely. It's my first real step out into the DS community, and surely Neil Armstrong never felt such exhilaration.

I haven't had all that much to write about lately. Ozzie was in the hospital briefly for some congestion/breathing issues, but you don't want to hear about that. You want observations, and I haven't had any to share for awhile. Until today.

My site has a cool feature called BlogWatch. It automatically scans other people's blogs for any new posts that mention Down syndrome. When it finds them, it feeds them right onto my site. So it's a nice snapshot of the latest DS discussions and a great way to find new DS blogs. Anyway, since Down Town launched I've been reading those posts, and today while doing that I realized something about myself.

Although most of the posts are written by parents of children with Down syndrome, many fall under an entirely different category. These are posts written by pregnant women who have just received test results that indicate they may be carrying a child with Down syndrome. This news is quite understandably terrifying and heartbreaking and stressful, and these women share it on their blogs (usually after additional tests show that the baby is just fine). Then these women and their friends and families post all kinds of comments:

Oh, what a scare we had.

It was the worst day of our lives.

Surely everything will be fine - the odds are in our favor. Not that we would have considered abortion...

These blog posts cut deep. It's just so hard to read the musings of people who are ecstatic about dodging the life I now have. Odds are, almost all of these people will have healthy babies. And they won't ever really think about Down syndrome again. They will look at my family – and my child – with pity. They will see my family and remember their little scare and they will feel relief.

I think I have handled the whole DS situation rather well. I love Ozzie, I'm happy to have him, and I don't sit and long for the child I don't have. I have never, ever been jealous of anyone else's baby. But this particular category of blog posts, the "relieved mom-to-be," causes some really rotten feelings in my gut. Not jealousy, but anger. I feel like these people have no right to even talk about this world. They haven't gone through boot camp. And I know these feelings are wrong, and I know this is something I have to work through and get past and leave behind forever. But it isn't easy.

So, to all you mothers-to-be out there who are afraid you may be carrying an Ozzie of your own, my heart goes out to you. I know your blog posts aren't even meant for my eyes. I hope your baby is healthy and perfect and beautiful. But I do have one small request. When you find out that your baby is perfect, could you please express your elation in a way that doesn't take a shit on my life? You work on that, and I'll work on my anger issues.

:)

Visit downtownds.com. Watch my animation. Tell your friends about my site.

19. Secret Agent

I had a brush with Down syndrome at the grocery store the other day. I was waiting in line to check out, and a young boy with DS was in line with his mother in the next aisle. At first he had his back turned to me, but somehow I instantly knew he had DS. As his mother was paying, he turned around and saw me and my cart piled high with food. Apparently it sang a siren song, because he walked right over and announced that he was going to help me. He pushed my cart back and got between it and the register and started unloading it with an eagerness and determination I rarely see from a cashier. To be clear, he was not an employee, he just really wanted to help. It was touching and comical and sort of profound for me – I felt like I could be looking at my own son in 15 years. Moments like that tend to hit like a punch in the gut in way I can't fully express in words.

Anyway, his mother finally saw what was happening and rushed over to convince him to let my cashier handle it. She apologized to me and thanked me for being generous enough to allow him to handle my food. I tried to tell her it was absolutely no problem, and I smiled a big smile and watched them walk away. The boy hugged the manager as he walked out.

So here's the interesting thing: I wanted desperately to tell her she had no idea how much I understood, but I didn't really know how to tell her that my own son has DS. I just couldn't fit it into that brief encounter. I looked for her as I walked out of the store, still not sure what to say but wanting to say something. But I didn't see her.

On the way home I tried to think about exactly what I should have said. I settled on "It's perfectly alright, I have a son just like him."

As I thought about it later, I was struck by how often I now feel like a secret agent - no one knows my true identity. It's irritating that we DS parents can't identify each other when we aren't with our kids. We need a secret handshake or something. Maybe I'll invent one.

18. Firsts and Lasts

These past few months have been such a surreal experience for me that it's easy to think of my new life as a series of 'firsts.' But that's an incomplete description. The full Down Syndrome experience isn't just about 'firsts' – it's also about 'lasts.' And so I want to take a moment to recount a few very personal 'lasts.'

The last joke I ever made at the expense of retarded people:

That sounds horrible - like I used to make a lot of jokes about retarded people. I didn't. I have never been unkind to others, especially not to retarded people. But in the course of a lifetime, haven't most people made an offhand comment about 'riding the short bus' or something? These are verbal misdemeanors for which we are all guilty.

Anyway, I remember the last time I made such a comment. My wife was pregnant with Ozzie at the time. I was at work, reading the news online. I clicked on a story about an Olympic gymnast from Russia or China, accompanied by a photo. She was a very masculine, odd-looking woman. Being the witty guy I am, I joked to my coworker that she looked like she was born with an extra chromosome. We both laughed.

My unborn child, the punchline. Irony so thick I can taste it.

To be fair, I meant no harm. It was an offhand comment, and one so trivial I shouldn't even remember it. But crossing the DS threshold has a funny way of forcing you to recount even the smallest of transgressions. And so it remains, preserved in the amber of my memory, the last such comment that will pass these lips for the rest of my existence.

The last time I looked upon the face of Down Syndrome from the other side:

My wife and I were at a festival in Raleigh - we were in a huge, loud room at the state fairgrounds packed with people and food and music. A group of six or eight adults with Down Syndrome walked past us and took their seats at a nearby table. I remember pausing briefly and giving them a second look.

At the time, the moment was insignificant to me. I didn't have any noteworthy thoughts or opinions about them, no amazing insights I can now share. But looking back now, I realize it was the last time I bumped into Down Syndrome while it was still a stranger to me. I wish I could go back to that moment and introduce myself.

And finally, the last time I didn't have a child with Down Syndrome:

My wife had been through a difficult pregnancy, capped off by a massive bleed in the middle of the night and a race to the hospital at 80 miles per hour for a C-section. We were in the delivery room. A nurse was holding Ozzie - he was minutes old. She held him up, and I caught my first glance of my perfect baby boy. Ten little fingers and ten little toes. He was wiggling and crying, eyes open. For that one brief moment, he was flawless. I exhaled - my worries melted away. A few minutes later I got the news.

Down Syndrome is a journey I never planned on taking, a trip into the unknown for which I didn't even have time to pack. But although I'm mainly focused the 'firsts' that lie on the path ahead, I'll remember those 'lasts' for eternity.

17. Seven months!

Somehow Ozzie's entire life, and everything I know about Down Syndrome, fits into a seven month period. Seems impossible, but it's true. An update on the longest seven months of my life:

Ozzie is doing very well. He's recovering from a bout of RSV, which is a nasty viral infection. It's the sort of thing that puts babies in the hospital. He is okay now except for some congestion, especially in the morning. He doesn't know how to make himself cough, so when he wakes up he starts making these weird groaning/moaning noises as he tries to clear his throat. I've decided that he sounds like either a monster in the basement or the guy in the next cubicle.

Ozzie is starting to eat solid foods. He likes squash and puffy cereal, and hates pretty much everything else. I hope that changes at some point, because if it doesn't, it's really going to limit our restaurant options (McSquash'N'Puff's, anyone?). He is also becoming more mobile, using a rolling technique to make his way across the living room. And he wormed his way forward on his belly this week, pulling himself about 12 inches. Which doesn't sound very impressive, but it wore him out.

And now for an update on my state of mind:

DS is finally becoming familiar to me. I'm not uncomfortable any more when I'm at the store with Ozzie and someone looks at him or comments on him. That sort of interaction was stressful in the first few months after his birth, but those feelings really started to dissipate around the six-month mark. Which is a huge relief, because it's not fair to Ozzie. Who knows - maybe I'll feel self-conscious again as he grows older and the DS becomes more obvious, but hopefully not. Hopefully I can always just enjoy being with Ozzie.

As I've grown accustomed to living with DS, it has become less scary. I now think of it not as a curse, but as a "life intensifier." That's sort of cheesy and New-Agey, but I can't think of any other description that's more appropriate. I'm sure DS will intensify the good, transforming even the smallest of Ozzie's accomplishments into causes for celebration. And it will intensify the bad, bringing my family more heartache than anyone deserves. I'm just hoping those two sides of the DS coin can balance each other out and bring us some sense of peace.

Lately, as Ozzie slowly changes from infant to little boy, I sometimes find myself unconsciously playing a mental game whenever I look at him. I stare into his big almond eyes, trying to imagine what he would look like without Down Syndrome. I subtract a little DS here, add a touch of mommy here, a dash of daddy there, trying to conjure the face of the perfect little boy I was anticipating those seven long months ago. I can't help myself – it's just fascinating to think about what he would look like without DS. Surely I'm not the first DS parent to wonder such a thing.

It doesn't matter anyway, because I can't really see any Ozzie but the one I have.

The one I love.