Thursday, August 5, 2010

61. Ozzie, Live and Unplugged

As promised, here are some current videos of Ozzie. He's a fun and active little guy - a perpetual motion machine. He is mischievous and stubborn and hilarious and exhausting and frustrating and... simply wonderful. I cannot imagine my life without him.

Wednesday, July 28, 2010

60. Upon Further Review, My Last Post Was Boring

It was really boring. I didn't start writing this blog so I could post emotionless updates on my state of mind. So let's spill some blood, shall we?

I'm two years into this journey.

The far shore - the one I left behind on the day Ozzie was born - is a distant memory. It's a place I can never return. I'm not sure I would even be interested in returning if given the opportunity. I have stopped looking back to the past, much like I have stopped looking forward to the future. I have this oddly myopic view of time these days, a visual impairment that resulted from staring too long into the void. It's a staring contest that I won, I guess, but it's one that changed me forever. Since then, I sort of take days as they come.

I'm two years into this journey, and I am not the man I used to be.

Truth be told, I'm not even sure I was a man before. I'm quite sure that I am one now. I have a completely different perspective on life. I have a healthy appreciation for the things that matter most. I have quiet disdain for the superficial problems that others seem to obsess about.

I read an article in the newspaper a few weeks ago about a mother whose young child had an eating disorder - a gluten allergy or something. Something serious, something hard to identify. But the doctors finally figured it out, and he is now on a restricted diet. And the mother's lament went something like this:

"The heartbreak - you have no idea. I mean, I wonder, when he grows up, will he ever even be able to take a date to a restaurant?"

Yes, sounds like a real nightmare. Sounds like the sort of thing I would have worried about, too, before I had to worry about whether my child would ever be able to go out on a date at all. Then again, my observation must sound ridiculous to a parent whose child is deceased.

I'm two years into this journey, and I do not have all the answers.

I can look at Ozzie and experience emotions that swing wildly from joy to terror in the span of a few moments. He makes me happier than I deserve to be. But the sadness stalks me, too, waiting for its chance to pounce.

We are members of a local science museum. We visit frequently, and whenever I go, the sadness waits for me in the gift shop. You see, the gift shop sells little astronaut costumes for children. Parents buy those costumes for their kids with nary a thought. Mommy zips up that suit and tells little Johnny that, one day, if he studies really hard, he can be an astronaut. He can be anything he wants to be.

I have not bought that suit for Ozzie. It just seems cruel.

Yes, it can be tough to fend off the sadness in the gift shop.

I'm two years into this journey, and I have lived to tell the tale.

Recently, another father - a man I had just met - pulled me aside at a local Ds function after I had introduced myself. His own journey started well after mine, and he told me how much this blog meant to he and his wife. He thanked me for the things I have written. He thanked me for my honesty. That brief moment meant more to me than he probably knows. And it raises an important point - honesty. If you are going to blog about something as important as Down syndrome, please do it honestly.

A certain very high-profile Ds blogger did a great job of turning me off quickly because her posts simply did not ring true. I know too many people who have gone through this process. I have read their most intimate thoughts. None of them experienced the instant Nirvana that is, apparently, her new life. Truth be told, it's hard as hell to work through that first year. Anyone who tells you differently - anyone who makes you feel guilty for not being blissfully happy in the months after the birth of your baby - is a liar. I think people get swept up in blogging, sometimes, and they feel that they have a responsibility to the Ds community to paint everything with beautiful colors. But sometimes the morning sky is blood red, and should be painted with a stiff, blood-soaked brush. I value honesty in a blog, above all else. At the very least, don't be dishonest. If you want me to read it, anyway.

I'm two years into this journey, and I think the roughest seas are behind me.

I still can't be sure of that, but I certainly hope so.

59. A Funny Thing Happened On the Way to the Rest of My Life

Whatever happened to Dan?
Where did he go?

A blogger friend told me that someone recently asked that about me. The answer is that I'm still right here. It's true that I'm not chronicling my life much these days. Doesn't matter, because no one reads my blog anymore (although I guess that's somewhat of a "chicken or the egg" conundrum). So, why am I not writing? Why am I not scouring other people's blogs and leaving witty comments every night? Well, the answer may bore you.

One day, not so very long ago, I realized that Down syndrome was consuming my life. I don't mean that Ozzie was consuming my life, I mean that I was spending my entire day with one foot dipped into the Ds world. I was reading a ridiculous amount of blogs, sharing my life with strangers, picking fights online (with those who deserved it), and, in general, investing a lot of my emotional energy on the subject. And finally something just snapped, and I reflexively took a big step back. I needed space to breathe.

I think I'm not searching for answers the way I once was. I'm not cutting a trail with a machete, I'm just sort of ambling along. Things have gotten much easier - I have figured out how to live. And life feels so normal now, I just don't feel compelled to share the minutia of my day-to-day existence. It seems uninteresting to me.

But on reflection, I realize that I didn't really tell my blogger friends about this transformation. And so my site gradually became less and less current. Less and less memorable. And finally, people just sort of forgot about my blog, I think. And that's okay with me, because many of my blog friends are very active online, and I know I don't give them a lot of reason to stop by anymore. My bad.

However, I am still here. I have not abandoned my blog. If you email me, I will write back to you. And I will continue to post my thoughts as I have them, just not the boring ones. Hopefully people will understand.

By the way, Ozzie is now walking full-time. And he recently turned two. And I have lots of photos and videos to post, I just haven't had lots of free time to gather and post them. I know that's a poor excuse, but it's the best one I have. I know that when Ozzie was born, it was really helpful for me to see videos of other children with Ds online. It helped me see the future in a way that text never could. So I promise I will post videos of Ozzie here so that others can watch him grow and develop. He is hilarious, and he has a smile as big as the horizon, and he brings joy to my life that you new parents cannot yet imagine. But you will experience this joy soon. Pinkie swear.

So that's my shocking story. I'm putting this message in this bottle and giving it a good hard toss out into the waves. If any of my blogger friends find it, I would love if they would leave me a comment. It's sort of boring all alone on this tiny island.

Friday, July 16, 2010

58. Helping Hand

Hi everyone.

My dear blogger friend is doing the thing that lots of people daydream about doing but never actually do. She's adopting TWO young girls (both have Down syndrome) from an Eastern European orphanage. My friend is not just daydreaming, she is really doing it. And you must understand that her intervention will literally save their lives. One of the little girls has a serious heart condition and needs proper surgical care. The other is getting too old for the orphanage and will soon be institutionalized, and in eastern Europe, that means this beautiful little girl with a big smile has a very high probability of wasting away and even dying from neglect in the very near future.

My dear blogger friend could really use everyone's help to ease the financial burden, because adoption isn't cheap. I mean, if you step back and take a big-picture view, it's amazing just how little it takes to buy two beautiful lives (because those two little girls are obviously priceless). But if we look at the situation in less poetic terms, it becomes clear that even the deal of a lifetime is sometimes very expensive.

So I ask that you please help my friend. With sugar on top. And a cherry.

She's set up a blog to explain everything and provide a place where people can donate. She's also currently holding a raffle on her blog, and the lucky winner will receive a beautiful piece of art. So please visit her blog and give, if you can. She has done more for the Down syndrome community than anyone I know.

Raffle for Mallory & Peach

Tuesday, May 25, 2010

57. Wally World!

So, yesterday we returned from a long weekend in Orlando. A full day's drive down, three jam-packed days of Disney, and a full day's drive back. The classic family vacation. I thought you might like to see some footage of our whirlwind trip:

I don't have any Ds-specific stories to share except for one sweeping observation: Ozzie is an ambassador of happiness. He smiled and waved to everyone, everywhere we went. Waitresses, lifeguards, riders standing in line around us, ride operators (ahem, "Cast Members"), people in the hotel elevator, people on the tram, etc. This went on for the duration of the trip. People loved him, they talked to him, they told us how adorable he was. He was a little lightning rod for cheer and merriment, which made for a fun and memorable experience. And if that's a glimpse of the future, it's a future I feel pretty good about.

Monday, May 17, 2010

56. Update

Hi everyone. I have been really disconnected from the blogging community lately. I have no great excuse - no jungle expedition, no voyage to Antarctica, no imprisonment in a foreign country. I've just been busy with life, and often exhausted and not much in the mood for blogging.

Something else has happened, sort of a sea change in the way I view my life. Ozzie has become very normal to me. So normal that I often don't feel like my life is special enough to blog about. My days usually feel like regular old days, not something that any of you particularly need to know about. I'm not here to bore people. So I just stopped posting. Not forever, just until I have something to say.

And now I thought I would share a few beautiful photos of my children that my wife took last week:

P.S. I did get the Yamslam deluxe, and it is pretty classy-looking. Thank you all so much for the help.

Tuesday, April 27, 2010

55. Yamslam!

Hello friends. I've been taking a break from the whole blog thing for awhile. And now I return from exile to ask a favor of you. I am addicted to a dice game called Yamslam. It's sort of like Yahtzee, only better. They made a deluxe version of the game that they don't sell in the store - you had to enter a contest to win it. I entered and never heard back. I wrote them a few days ago, six months after entering the contest, and asked if there are any plans to ever sell it in stores. I told them how much I love the game and how I would be willing to pay up to one million dollars (Monopoly money) to obtain one.

The president of the company wrote me back today and told me that if I can get 30 people to "friend" their facebook page by next Tuesday, they will ship me one for free. Can you PLEASE help me? Pretty please?

Here's the link to their Facebook page:

You don't have to do anything special to let them know I sent you, just add yourself to the "liked it" group in the left column of their page.

Sunday, March 21, 2010

54. Winslow Smudge

In addition to being World Down Syndrome Day, today is also World Poetry Day. And so it is a most fitting day to reveal my alter ego, Winslow Smudge. Regular readers of Down With Oz know that I have written a few poems, but those few poems aren't the whole story. All my life I have had odd little thoughts bouncing around in my head. I haven't ever recognized them for what they are. But since Ozzie's birth, I have come to realize that they are little bits of poetry. Recently I decided to stop ignoring these thoughts, and instead to start breathing life into as many as I can. And so I secretly created another blog: The Conservatory for Flittering Thoughts. I write there under my pen name, posting poems as they come to me. Happy poems, silly poems, sad poems. Poems about life, poems about loss. Some of my poems are about Down syndrome. I don't post them on this blog, because I don't feel that they belong here.

I plan on illustrating some of these poems, eventually. My ultimate goal is to get an agent and publish a book. So if any of you are literary agents, send me an email.

If you have children, I recommend clicking on the "Poems for children" section in the right-hand column. My own kids love them. I hope yours do, too. I'll sign off with one of my poems. Enjoy:

Brother Nature

I'm Mother Nature's brother
I'm a dirty rotten guy
Not as well known as my sister
Though I give it my best try

I'm mischievous and devious
My list of exploits long
I tinker with my sister's work
Until I get it wrong

Ever marveled at the platypus's
Bill, webbed feet and fur?
I mixed a duck and beaver
With a shake and then a stir

I put the hump upon the camel
Pressed the nose of the poor pug
Put the prickles on the porcupine
So he could never hug

I locked away the lowly turtle
Deep inside his boxy shell
Honked the horn of the rhinoceros
Though I don't think he could tell

Yes I'm a dirty rotten scoundrel
I admit this fact of course
Scrubbed the stripes right off a zebra
That's how I made the horse

I broke the mole's eyeglasses
Told the goose that it could sing
Plucked the feathers from the fruit bat
Gave the honeybee its sting

Stretched the neck of the giraffe
And then I stole the monkeys' pants
Stripped the peahen of her plumage
Hid the uncles from the ants

I like trickery and mischief
And I'm quite the gifted thief
You'll find traces of my handiwork
Wherever there is grief

I laundered the flamingos
With a bright red kneehigh sock
And I crammed those extra teeth
Into the mouth of the poor croc

Yes I'm a schemer and a rascal
But I don't get a fair shake
For if I hadn't swiped that lizard's legs
We wouldn't have the snake

So next time you stare in wonder
As a flying squirrel takes flight
You should thank old Brother Nature
For providing such a sight

Monday, March 15, 2010

53. Wounded

Like clockwork, once a month an idea for a post finds me.

Yesterday I walked into Wal Mart. The McDonald's at the front of the store was shut down, and I walked over to the greeter to ask what happened to it. I quickly realized that he had some sort of slight mental disability. But what struck me was his eyes. He had trouble making and maintaining eye contact. This man was a decade older than me, and he timidly looked down at my shirt while we spoke. He looked wounded.

As I walked away, I thought about Ozzie. I thought about how I will make it my life's goal to ensure that he never has that wounded look in his eyes.

And in case anyone is wondering, they are replacing the McDonald's with a Subway.

Wednesday, February 17, 2010

52. Sign it

Please take a moment to sign this letter to Sarah Palin.

Friday, February 12, 2010

51. Sarah Palin

I have never written about politics on this blog. If you want politics, you can read a newspaper or watch TV. But it's becoming clear to me that I need to say a few things about Sarah Palin.

I know that a whole lot of people in the Ds community are fervent supporters of Palin. I also know that a whole lot of them aren't. You can officially count me in the latter group. I'm not going to go into all the details of why I dislike Sarah Palin. Half of you know exactly why, and half of you don't care to hear it. So let's just push aside the appetizer and go straight for the main course:

The "fucking retarded" debacle, with a side of new potatoes and asparagus. Pairs wonderfully with merlot.

Rahm Emanuel was out of line when he used that slur in a staff meeting. End of discussion. And normally I would say that it's great that someone drew attention to it, got the press involved, etc. Normally I would be very happy about that. Unfortunately, the person who chose to call him out was Sarah Palin. As someone who does not support Sarah Palin, as someone who questions her motives, I thought I smelled a rat. I suspected that this was a calculated political maneuver. But I gave her the benefit of the doubt, because this issue is very personal to me. It's an area where I will happily set aside politics and personal feelings and get behind someone from the other team. I WANTED to believe.

And for about five minutes, I did believe. And then, Sarah Palin found herself backed into a corner by a guy who plays chess, not checkers. Rush Limbaugh. I'm not entirely clear about the nuances of Rush's motivations. I don't know if she just caught him on a bad day, or if Rush was trying to kneecap Palin before she becomes a larger problem for the Republican party as they begin laying the groundwork for the next election. Either way, Rush saw an opportunity to grab some of the spotlight for himself at Palin's expense. And so he took a turn tossing the "R" word around, to great effect. Which, I think, is the last thing Palin anticipated.

And then - the moment of truth. It was time for Palin to stand up for the Down syndrome community, for realsies. It was finally time for her to stand up for Trig, and for Ozzie, and for me. No politics.

But she didn't.

Palin handed Limbaugh a free pass. She knows that Limbaugh's audience is larger than the Ds community. It's a simple numbers game. So Palin sold her child's dignity for thirty pieces of silver. And try as she might, she isn't articulate enough to spin herself out of this, no matter how many notes she has written on her hand. Her naked ambition is on full display. And so, from this point out, Palin will never again get the benefit of the doubt - not from me.

I'm late writing about this. The reason I'm late is because I didn't ever plan on tackling this one. I didn't want to alienate any readers who happen to disagree with my politics. I have a broader message to share, and I would like to think that all people - no matter their political or religious leanings - could feel comfortable visiting this blog. I still hope that's possible. But the longer I sat on this issue, the more uncomfortable I became. Because it slowly became clear to me that I was doing the very thing that Palin did, the thing that disgusted me and made the bile rise to the back of my throat. I was giving Palin a free pass, letting her slide, to keep from losing my readers. I was playing a numbers game of my own. And it's a game I have decided I will play no longer, because Ozzie's dignity is worth more than that.

Ozzie deserves better than Sarah Palin.

Tuesday, February 9, 2010

50. 24 carat "Retard"

This post is particularly difficult to write. It's not easy to admit when you're wrong. But I owe the world an apology, so it's time for me to swallow my pride.

Since Ozzie's birth, I have become an activist for children who have Down syndrome. Specifically, my goal is to stamp out online hate speech that is directed at the mentally disabled. But the recent national debate about the word "retarded" has shown me that this is a fool's errand. A retard's errand. Because in the past week I have come to understand the true value of retards. They are worth their weight in gold.

For example, they can be used as a classic visual joke. Just check out this clip from the Colbert Report. Stephen Colbert is one of my favorites, and this is Stephen at his finest:

The Colbert ReportMon - Thurs 11:30pm / 10:30c
Formidable Opponent - Khalid Sheikh Mohammed's Trial
Colbert Report Full EpisodesPolitical HumorEconomy

You might think that a visual joke would be enough. But retards have so very much more to give. See how they offer themselves up for a punishment in this article about football, brought to us by Brian Allen Carr at Dark Sky Magazine:

Those retards are just so cool about it, always stepping up to be the butt of the joke. Who knew retards even cared about sports?

So, surely that's it, right? That's all they're good for? Not even close. Those retards just keep giving. Need a snappy comeback? Turn to the retard. Check out this comment I read on my favorite movie news site last night. I just casually stumbled upon this:

Good one, madCanada. Deft use of the "R" bomb. Totally appropriate as a metaphor when you disagree with someone's taste in film. I mean, ricaleite2 is totally a retard. Am I right?

See? Society needs retards. The words "retard" and "retarded" are fundamental building blocks of the English language. Removing them would be like striking the letter "E" from the alphabet. Parents like me, who have been inexplicably offended by hearing those slurs tossed around, are selfishly trying to steal what we don't even rightfully own when we speak up for our children. And if you don't agree - if you just can't get this through your thick, retarded skulls - here's a brilliant commentary by comedian Lewis Black from last night's Daily Show. He really hammers that point home:

The Daily Show With Jon StewartMon - Thurs 11p / 10c
Back in Black - The R-Word
Daily Show
Full Episodes
Political HumorHealth Care Crisis

Hear that laughter in the audience? Those people agree! They love retards! They love all things retarded! That faceless laughter is what finally made me see the error of my ways. I finally understand that I'm just being an asshole.

When Ozzie was born, I was sad. I was sad for awhile. But now I realize what a retard I was for feeling that way. Because the day Ozzie was born, fate handed me a living punchline. A little wriggling, squirming joke. A lifetime of laughter. And slowly but steadily, I'm learning that it's okay to love him a little less than I love my daughter. Society is constantly reminding me that it's okay to laugh AT him, not WITH him. That's his true value, the gift of the retard, and it just warms my heart.

Last night I gave Ozzie his breathing treatment. I placed a little purple breathing mask, which is adorably made to resemble a dinosaur's face, over his nose and mouth and turned on the machine that billows medicated fog into his lungs. I do this because Down syndrome has affected the anatomical structure of his airways and has weakened the muscles of his tongue and throat. He doesn't breath well, especially when he has a cold, and he has a cold right now. I thought about that as I held him. I thought about how unfair it is that he has to fight to breathe. And I'll admit, I started to get a little bit sad. But then I looked down at him, and instead of seeing my loving child, I saw him for what he really was - a wheezing retard in a dinosaur mask. Comedy gold. Can I get a rim shot?

So please, world, accept my apology. I didn't mean to be a buzzkill. I just didn't realize how much you treasured retards.

Monday, January 18, 2010

49. Bananas

Lunch in the dining hall at my alma mater. Catfish, sweet potatoes, squash - things sure have gotten healthier around here in the decade since I graduated. One of the cafeteria workers catches my eye. A grown man with Ds. I watch as he methodically, deliberately refills baskets of bananas at the fruit station. Students buzz around him.

Suddenly, everything is buzzing around me, too.

I wonder what it feels like to go to college every day, but not really go to college? What's it like to serve these students? Are they kind to him? Do they talk to him? Would I have talked to him when I was a student? I probably would have said hi.

I am captivated by this man. Why? He's just a man. Look away, take a bite. Look back. He doesn't see me. He's busy. I'm a jerk for staring at him. Look away.

Maybe Ozzie could work here one day.

I feel like I'm sinking. Look back at him. I'm Mr. Down syndrome now, why don't I go over and say hi? But what am I supposed to say? If I was him, would I want some guy walking up and butting into my life?

I bet he could tell me something profound. He could shine a light for me. Everyone could use a little more light. Maybe he and I could get to know each other. He might be really interesting. Look away.

My friends must think I look spaced out right now. I must be a terrible lunch companion. I'm not even here. I'm somewhere else, lost. Maybe they haven't noticed.

Look back. He's still there.

A lot of fruit passes through this joint, apparently.

Hell, why don't I just go over and say hi? I could use a banana. No, no.

This is ridiculous - why aren't I talking to him? Am I a fraud? Damn, man - I'm making this about me, and it's not about me, and it's not about Ozzie. I'll tell you why I'm not talking to him - because his life is none of my business, that's why. He's just a stranger doing his job. And I'm sitting here dissecting him like he's a lab frog. That's offensive. Look away.

Why am I so obsessed with him? What about these other cafeteria workers? Why don't I take interest in their lives? I bet they are so bitter, serving up these children of privilege day after day.

Oh come on dude, this is a state school.

Still, I bet these workers are bitter. But I bet he isn't. Look back at him. He's still at the fruit counter, just doing his job. He's so gentle with the produce. As a former produce clerk, I can appreciate that. Nobody likes the bruised fruit...

I'm such an ass.

How can one tiny chromosome wield such power over me?

He's a short guy.

I bet Ozzie will be short like that. That's a good height for Ozzie, really. It's the perfect height for me to put my arm around his shoulders as we stroll along the sidewalk.

That will be nice someday. Yes, someday, that will be nice.