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.