It's my blog, but it's really YOUR blog. It's everyone's blog: a showcase, a companion, a way to meet new friends, a way to share your stories. And, most importantly, it's a road map for new parents. I'm officially launching TPFFDSBB with a select few amazing posts already in place, and I promise to add many more as I find them.
I hope you enjoy it, and I hope you find it to be a useful and valuable resource in the years to come. Please pass the word - tell all of your friends to come have a look. And I would love to hear what you think about it, so leave me a comment or send me an email if you have something to say.
This is the post that should not exist, because I'm too afraid to write it.
Occasionally, I think about the qualities of life that have great value to me. I value good, functional, beautiful design in all things. I love carefully crafted words. I like to be sucked right into a compelling piece of art. I like great jokes, even really simple ones that make me think about something in a totally new way.
I like beautiful songs. I especially like it when I listen to a great song, over and over, and one day I realize that I haven't ever paid close attention to the words. And then, when I play it again and make a real effort to listen to the lyrics, I realize the words are even more brilliant than the music. That's so cool.
I like amazing new inventions - the simpler and more obvious, the better. People have been thinking about things for so long, all of the really obvious solutions should have already been thunk. So it's really neat when someone invents something as interesting and simple as a bladeless fan (even though Sir James Dyson seems excruciatingly pompous). In all honesty, though, I guess one can argue that nobody really needs a bladeless fan. And I guess Dyson would argue that a bladeless fan isn't so simple (it sort of is, though).
I like to work with brilliant people. I like it when people tell me I'm brilliant. Everyone values brilliance. We like smart, brilliant things of all stripes.
Yes, these are the things I value. These are the things I have always valued. And I wonder, sometimes, where Ozzie fits into all of this. Because it's quite likely that "brilliant" won't be a word that will ever be used to describe Ozzie, or the things he does. It's sad that I have spent so long placing so much value on such a narrow aspect of life. I feel guilty about that. But I'm also excited about all of the new, equally valuable things I am now destined to discover. Things I may never have noticed if Ozzie had not been born.
I think our overvaluing of brilliance may be one of the reasons people like Ozzie often find themselves tucked away in the margins of society. People are too busy valuing the things that, in the end, don't really matter all that much. Things like bladeless fans.
Because for all of the ingenious things Dyson has invented, he has never made anything as valuable as a smile.
Lately, my brain has been rattling with a jumble of thoughts and reflections that I have not been able to organize into anything resembling a meaningful post. So forgive me if what you are about to read seems disorganized. I'm trying to collect all of these little ideas, pound them into submission, and mold them into something at least semi-interesting.
I keep thinking about the impact Ds has had on my life and on my worldview. How suddenly and severely it changed my perspective on so many things. To me, Ozzie's surprise diagnosis felt every bit as dramatic and unexpected as the eruption of Mount Vesuvius must have felt to a Pompeii farmer. I scarcastically joked in an early post that the whole surprise Ds experience wasn't all bad. Looking back now, from a safe distance, I know that to be true.
What if a stranger walked up to you one day, randomly, and offered to reveal to you the great mysteries of the world? The answers to the big questions. What is the meaning of life? What is true love? What am I really made of? What is my purpose? What does it all mean?
Just what would you be willing to give up to learn the answers to those questions? What if the stranger told you that the price of this knowledge was a staring contest with true terror? A glimpse into the deepest, darkest place imaginable – the mouth of Hell. Would you still take his offer? Could you summon the courage? Would the good outweigh the bad?
And what if he gave you no choice, what then? What if you were dragged away, kicking and screaming, and forced to take this test? When it was over, when you had survived, would you consider yourself worthy of the knowledge you now possessed?
I sometimes feel like a random guy who took the test. I didn't ask to be tested, I never expected to be tested, and now that it's over, I'm just trying to make sense of my life. Things look different now. Not in a bad way, in a profound way. Sometimes in a wonderful way. And sometimes in a painful way.
For example, I'm a huge film fan, and every now and then as I'm scanning through my collection of DVDs I come across an old favorite that seems, now, like a relic from a time in my distant past. Edward Scissorhands. Frankenstein. Forrest Gump. The Elephant Man. I'm not sure I can watch them anymore, at least not yet, and perhaps not for a very long time. I certainly can never again watch them with my old eyes, and I'm worried what my new eyes will see. Sometimes I miss those old eyes. Maybe that's just part of the debt I still owe for my hard-earned knowledge. But I guess, in the grand scheme of things, that's not such a huge price to pay. My apologies to Johnny Depp.
So here I stand, a fairly reserved, private and regular guy. A random guy with a profound new perspective, just trying to find my way through the falling ash. With me walk scores of other random people, many of whom blog about their experiences, too. Somehow we have all become accidental advocates, publicly and painfully growing into our new roles online. And just as we begin to make sense of our own lives, we find ourselves helping other new parents out of the darkness and into the light. That's a strange place to be, and the pay stinks, but damn if it doesn't feel worthwhile.
My point? I don't know if I have an overall point (I told you this would be a bit disorganized). If I'm forced to have one, my point is that a year and a half later, I'm still sorting things out. I don't know, maybe I'll be sorting things out forever. But I would like to think that at some point I'll be able to wrap my brain around all this stuff. And on that day, I'm going to have a couple of beers while I watch Edward Scissorhands.
So, five days ago I declared war on a nationally syndicated columnist because he used a very hurtful headline on his own blog. The columnist is Dan Savage, the headline was "The Tard Supper." I'm not going to go into all of the details about this situation – anyone who isn't familiar with it can read all about it on my advocacy blog, Oz Squad.
Anyway, to sum up what happened, I was offended, along with scores of other parents of children who have Down syndrome. We posted dozens of comments on Dan's blog asking that the headline be removed and demanding an apology. I actually made direct contact with Dan via email. He didn't apologize, but he did read my emails and he did write me back a few times (too bad he had nothing to say). He very likely even visited this blog. But it looks like that's all I'll ever get from Dan Savage.
Days later, I'm left to ask myself why, exactly, this particular episode struck so deep a chord with me. Why did I care so much about this headline? Aside from the fact that the headline was hate speech (wildly inappropriate, especially when used by a syndicated columnist), the answer, I think, is that my idols are falling before my eyes. I was a fan of Dan's column, just like I was a fan of the comedian/radio host I mentioned a few posts back. It's really shocking when a person you like says something so hurtful for such a cheap, disposable laugh. I feel betrayed.
I don't want this to be so personal. I want to just brush it aside and forge ahead, just forgive and forget. But something about this particular brand of senseless mocking is just unforgettable for me. It leaves a stain that never really washes away. I can read Dan's column again, I guess, but I'll never really enjoy it the same way. Not ever again. No matter how hard I try.
I have this uneasy feeling that this sort of thing will continue to happen, and I'll gradually have no more idols. No place to turn for entertainment. Jon Stewart? Colbert? Conan? Please, please no. Please guys, don't say anything stupid. Just let me believe that you are decent men, even if you are all jackasses.
Like everyone, at the end of the day I enjoy a good laugh. But I would appreciate it if people did not make jokes at the expense of my child.
Also, I would appreciate it if Saturday Night Live was funny again - last night's episode was terrible. But I digress.
This message is for other parents who have a child with Down syndrome. Lisa, my amazing and fantastic friend over at Genetically Enhanced, needs our help. Lisa is offering us the opportunity to help update and improve the online Ds information found on the Centers for Disease Control and Prevention (CDC) Web site. You can read all about the project here.
Hi everyone. Lately I haven't been all that active online, but I have a good reason. Last week I had surgery on the tendons in my ankle, and I have been recovering in my recliner (which is downstairs), far, far away from my computer (which is upstairs). I don't have a cool sports-related injury or anything. Apparently I was born with crummy ankle bones that aren't shaped properly, and those crummy bones have put a lot of stress on my tendons over the years, and lately I have been experiencing a lot of pain and swelling. So the doc has apparently taken care of the problem in my left ankle, which was the worst offender. Anyway, I thought I would share a few recent photos with you.
Ozzie, helping me recover
Layla and Ozzie (Supergirl and Superman) on Halloween
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.
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."
"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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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...
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."
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.
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.
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.
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.
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.
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.
Daniel Niblock is a graphic artist and animator who lives in Durham, North Carolina. On July 14, 2008, he became the proud father of his second child: Ozzie, a 4 lb., 11 oz. baby boy. Ozzie has Down syndrome. This blog chronicles the bewildering experience of stepping into a topsy-turvy new world. It began as a place where family and friends could come to read words that were too difficult to speak aloud. It has transformed into a place where people can read about discovery, strength and love. Hopefully these collected reflections can help others find the way out of the darkness and into the light.