Thursday, March 12, 2009

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.


TUC said...

Don't beat yourself up over your old schema, Obama did it, why not you? Sometimes irony strangles.

I spent a long time in NICU and PICU... feels like it was a war zone but the casualties, the warriors, were just tiny babies... and their parents were shell-shocked. One of the soldiers was a baby boy, born perfect... ravaged at 6 days old by meningitis... left alive but neurologically broken. It was the last time I thought that ds sucked. What I wouldn't give to find a way to help that mom with "firsts & lasts"

Jen said...

This is a great post, and oh, have I been there. I think about my "lasts" all the time.

Found you through Lisa at Finnian's son Evan is almost three and has DS. (and we're in the Carolinas too...Greenville, SC).

DownTownDan said...

Glad to meet you Jen - thanks for posting. I'm sure a lot of people have some really heartbreaking lasts. I imagine there must be some bully out there who spent his early years picking on a DS kid, and who now has one of his own. I haven't heard from any of those yet, though.

Hector and Jennifer Varanini Sanchez said...

Amazing post, amazing perspective, gets me thinking about so much!