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.

16. Ozzie Laughs!

15. Five months

Hello again, everyone. Somehow I missed a month - sorry about that. Since my last post, Ozzie has started interacting with us. He smiles a tremendously large smile, he grabs at his toys, he pulls his sister's hair. He wants to laugh, but he doesn't quite know how. All he can muster is a half-chuckle. He is absolutely adorable, says everyone, and I know they aren't lying.

Ozzie's big sister is in smitten with him. She takes every chance she gets to snuggle with him and tell him she loves him. She "teaches" him things all day. I have honestly never seen a little girl love a baby as much as she loves Ozzie. We're talking Hallmark Channel levels of sappiness.

Ozzie loves to be held more than any baby I have ever seen. He never wants to be put down, which makes it difficult to accomplish anything in our home. But he's so huggable we don't care. He has begun therapy for a very minor issue - his neck and torso strength. His muscles are just a little bit weaker than normal babies', so we have to support his head a bit more than we should. He can hold his head up on his own, just not for extended periods. So a therapist has visited a few times to teach us a few simple exercises that will help him get more control. And he is already showing excellent results.

The whole Down Syndrome thing is becoming more of a non-issue every day. I don't constantly dwell on it anymore. The fear and darkness I experienced immediately after his birth has given way, replaced by the joy of having a baby boy in my life. There are many days when the words "Down Syndrome" are not spoken. That has to be a sign that we are entering calmer waters.

I think, in some ways, my mind has begun to slow down a bit. I'm not trying to map out Ozzie's entire future, because it's impossible and stressful and probably unhealthy. Whether this mental shift is a defense mechanism or the result of exhaustion is unclear to me, but it is relaxing.

I am left with only one true worry, but it's a big one. We still don't know what Ozzie's mental capacities will be. Everything we see every day seems to indicate that Ozzie will function at the high end of the spectrum. That's good, right? Of course it is. But in some ways, I think high intelligence could become a curse. A thought exercise:

I imagine a see-saw. On one side we place intelligence. On the other side, we place emotional health. As one goes up, the other goes down.

Imagine an intelligent DS child in a class of normal kids. Imagine that child feeling attracted to girls in the class - and knowing they aren't really available (I can think of many similar quandries, but that's the one that really cuts to the quick). Imagine the emotional struggles this could cause. Imagine the conversations a father must have with this child throughout the formative years. Imagine you are that father. I am.

Now imagine a DS child on the lower end of the intelligence spectrum. Although his world is radically different, I bet those particular emotional minefields aren't really as tough to navigate. Perhaps they can be avoided altogether. It's possible that this child is even happier than the intelligent DS kid. Is this a blessing, or a curse?

Maybe I'm selfish and horrible for even thinking such a thing, but that's what goes through my head a lot. Two possible roads lay ahead. I don't get to pick which one I go down. Both look bumpy and curvy and long. But I'm going to do my best to forget my troubles, put the top down, crank up the tunes and enjoy the scenery.

14. Three months

I think I'm irritating people because I'm not posting frequently enough. If you are one of those people, thanks for taking interest in my life.

So let's catch up.

Down Syndrome is slowly becoming woven, permanently, into my day-to-day existence. I have a heightened sense of awareness for a syndrome that I never really thought about in the past. Dina and I recently attended two functions for DS (that's the hip way to say it). The first was about three weeks ago – a meeting sponsored by the Triangle Down Syndrome Network (TDSN) especially for new parents of children with DS. We met at a church in Raleigh. About six other couples came, and we talked for an hour or two. We sat in a circle and went around the room as everyone shared their stories.

I had two revelations at this meeting. First, everyone else's stories were much more devastating than ours. Horrible health complications, hospital screw-ups, etc. It made me feel lucky (relatively speaking) for the first time in a long time – I would not trade my situation for any of theirs. The second was that having a "surprise" DS child is not so special after all. Almost everyone we met didn't know their child had DS until the birth. And that struck me as amazing, because many people have amnio tests that can pick up this disorder. Clearly the vast majority of people who knew the diagnosis before the birth took steps to ensure that they would never bring a DS child into the world. I found out later that more than 90 percent of DS fetuses are aborted. I'm not necessarily a pro-lifer, but damn, that ain't right.

I take comfort in reassuring myself that, if I had known, I would have been in the ten percent. Surely I would not have chosen the alternative. Surely. But would I? Dina and I have had intensely deep discussions since Ozzie's birth. We have confronted, head-on, issues that we had never thought about before he came along. Our entire world view has changed. So I can only imagine what kinds of things people talk about when they find out during pregnancy. I can't walk in their shoes, because I didn't have the opportunity. I do know that they endure a special kind of pain, a choice between a life they can't imagine and a quick press of the restart button. It's incredibly sad that such a vast majority of people hit the button.

Okay, enough of that.

The second DS function we attended was last weekend, also in Raleigh. The annual "Buddy Walk" fundraiser for the TDSN. It's the kind of thing I may have made a joke about as a teenager. I can assure you it's not a joke now.

It's hard to describe the feeling you get as you walk into an event like that and realize that it's YOU now. These people are YOU. They aren't THEM anymore, and they will never be THEM again. My three-year-old daughter peppered us with questions on the way there, in the way that three-year-olds always do.

"What will we do?"
"Play, have fun, eat food."

"Will my friends be there?"
"No, but lots of other kids will be there."

Is it at a park?
"Yes."

Why are we going?
"Uhhhh. Um. Uhhh... we just heard it was fun, sweetheart."

How do we even begin to talk about this to a three-year-old? So that's what was going through my head as we parked and waited alone for the trolley. And then it pulled up and a severely disabled DS child climbed down the steps. And I knew this would be a trial by fire.

But guess what? It really wasn't. We saw all sorts of DS children, some severely affected, some so mildly affected that you could pass them on the street and never pick up on it. But the DS children weren't the ones who caught my attention. The normal children did. The ones that filled the bouncy houses, the ones in line to have their faces painted, the ones who stood in line to get hotdogs. DS doesn't just affect the affected - DS children have brothers and sisters for whom this disorder is also a part of daily life.

It was at this function that I had my third revelation. DS, a club that no one ever asks to join, does not discriminate. You, or someone in your family, is tapped, and everyone in that family is handed a lifetime membership. Normal, everyday people, young and old - people you might never suspect - have been tapped. It's not fair, it's not the life anyone imagines, but it is reality. The Buddy Walk helped me see just how many people are members of this exclusive club.

So that's what's been going on for the past month. DS is an inescapable part of our lives. We don't sit around and discuss it all the time, we don't read DS books and watch DS DVDs and host DS group meetings and hang out with DS friends and bore our relatives with DS statistics – we don't obsess about DS the way people who really get into recycling obsess about a Coke bottle in the trash. DS is not our hobby. But DS is always in the background – in the quiet moments. Driving home from work, or sitting in my chair at night, having a glass of whiskey. I think DS thoughts. I try to wrap my mind around profound subjects. I think about Ozzie's future, my future, the trials that await us.

The joke's on me now. I'm trying my best to laugh WITH myself.

13. Two months

We've reached the two-month mark! Ozzie is beginning to fill out a bit, but he's still so tiny he looks like a three-week-old. The past several weeks have been uneventful. We have not had any additional doctor visits or any therapy sessions - having Ozzie has been just like having any other baby.

We have gradually started reading some of the books we were given in the hospital. I haven't sat down and read a complete book yet, but I have read chapters that looked interesting to me. I can read that stuff now without getting upset. About 90 percent of the pain is gone. The sadness I still have inside is focused on Ozzie's future, which, at this point, is unknown. I'm mostly saddened when I think of the questions I will have to answer some day. Questions for which I have no answers...yet. That's the hardest part about having a child with Down Syndrome.

With a typical child, you wonder about his future through a narrow lens:
Will he be a good kid or a bad kid? (probably a good kid)
Will he be a doctor or a teacher or a businessman? (probably not a doctor, but that's okay)
Will he meet a wonderful girl and get married and give me grandchildren? (hopefully)

Down Syndrome has pulled the entire frame of reference out from under me.
Will he be able to speak normally? (let's keep our fingers crossed - many parents use sign language)
Will he be shunned by other children in the neighborhood? (please, please no)
Will I be wiping his butt when he is ten years old? (I hope not, but I guess it won't be the end of the world)
Will he ever live on his own? Have a girlfriend? Get married? Hold a job?

How does a child with Down Syndrome view the world? I have never seen a person with Down Syndrome in a movie, at least not that I can remember. With few exceptions, every story you have ever read and every TV show you have ever watched was populated exclusively with "regular" people. And why wouldn't they be? I've never even given it a second thought. But now I find myself trying to imagine how Ozzie will view his place in a world that in some respects has been built for everyone but him. It's the kind of thing that blows your mind.

Some of the books I have read say that after awhile, parents look at their child and don't see the Down Syndrome any more, they just see the person. That has not happened for me yet. I can't even imagine looking at Ozzie and not seeing it. But what has happened is that I see the Down Syndrome and it's okay. It's not soul-crushing, it doesn't make me angry. It really is okay.

12. Living

We're a few weeks into our new life, and, aside from a home visit by a social worker, living with Ozzie has been remarkably unremarkable. Round-the-clock diapers, feedings, diapers, feedings, diapers, diapers and more diapers. Just like any new baby. I've actually been struggling to find something to write about, other than typical baby stuff. Maybe that's the lesson here – he's just a baby.

Although he is too small to be away from home for long, we have taken Ozzie on a few brief outings. People "ooh" and "ahh" and talk about how beautiful he is. Life is interesting that way – for a brief period after we are tossed into the world, strangers feel compelled to step up, check us out, and pay us a heartfelt complement. Even if life eventually kicks the crap out of us, we all start out on the right foot.

11. Meet Ozias Andre' Niblock

10. Me Again

Today I came back to life. At last, I can breathe again. Admittedly, I don't think too far into the future. But even the future, I'm now certain, will be okay.

Slowly, the curse is beginning to wear off. I'm finally able to go long stretches without reliving the millisecond when my life detonated. Life is funny: it takes about as long to adjust to a new reality as it does to break in a new pair of shoes. I wouldn't have guessed that.