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.
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.