I think I'm irritating people because I'm not posting frequently enough. If you are one of those people, thanks for taking interest in my life.
So let's catch up.
Down Syndrome is slowly becoming woven, permanently, into my day-to-day existence. I have a heightened sense of awareness for a syndrome that I never really thought about in the past. Dina and I recently attended two functions for DS (that's the hip way to say it). The first was about three weeks ago – a meeting sponsored by the Triangle Down Syndrome Network (TDSN) especially for new parents of children with DS. We met at a church in Raleigh. About six other couples came, and we talked for an hour or two. We sat in a circle and went around the room as everyone shared their stories.
I had two revelations at this meeting. First, everyone else's stories were much more devastating than ours. Horrible health complications, hospital screw-ups, etc. It made me feel lucky (relatively speaking) for the first time in a long time – I would not trade my situation for any of theirs. The second was that having a "surprise" DS child is not so special after all. Almost everyone we met didn't know their child had DS until the birth. And that struck me as amazing, because many people have amnio tests that can pick up this disorder. Clearly the vast majority of people who knew the diagnosis before the birth took steps to ensure that they would never bring a DS child into the world. I found out later that more than 90 percent of DS fetuses are aborted. I'm not necessarily a pro-lifer, but damn, that ain't right.
I take comfort in reassuring myself that, if I had known, I would have been in the ten percent. Surely I would not have chosen the alternative. Surely. But would I? Dina and I have had intensely deep discussions since Ozzie's birth. We have confronted, head-on, issues that we had never thought about before he came along. Our entire world view has changed. So I can only imagine what kinds of things people talk about when they find out during pregnancy. I can't walk in their shoes, because I didn't have the opportunity. I do know that they endure a special kind of pain, a choice between a life they can't imagine and a quick press of the restart button. It's incredibly sad that such a vast majority of people hit the button.
Okay, enough of that.
The second DS function we attended was last weekend, also in Raleigh. The annual "Buddy Walk" fundraiser for the TDSN. It's the kind of thing I may have made a joke about as a teenager. I can assure you it's not a joke now.
It's hard to describe the feeling you get as you walk into an event like that and realize that it's YOU now. These people are YOU. They aren't THEM anymore, and they will never be THEM again. My three-year-old daughter peppered us with questions on the way there, in the way that three-year-olds always do.
"What will we do?"
"Play, have fun, eat food."
"Will my friends be there?"
"No, but lots of other kids will be there."
Is it at a park?
Why are we going?
"Uhhhh. Um. Uhhh... we just heard it was fun, sweetheart."
How do we even begin to talk about this to a three-year-old? So that's what was going through my head as we parked and waited alone for the trolley. And then it pulled up and a severely disabled DS child climbed down the steps. And I knew this would be a trial by fire.
But guess what? It really wasn't. We saw all sorts of DS children, some severely affected, some so mildly affected that you could pass them on the street and never pick up on it. But the DS children weren't the ones who caught my attention. The normal children did. The ones that filled the bouncy houses, the ones in line to have their faces painted, the ones who stood in line to get hotdogs. DS doesn't just affect the affected - DS children have brothers and sisters for whom this disorder is also a part of daily life.
It was at this function that I had my third revelation. DS, a club that no one ever asks to join, does not discriminate. You, or someone in your family, is tapped, and everyone in that family is handed a lifetime membership. Normal, everyday people, young and old - people you might never suspect - have been tapped. It's not fair, it's not the life anyone imagines, but it is reality. The Buddy Walk helped me see just how many people are members of this exclusive club.
So that's what's been going on for the past month. DS is an inescapable part of our lives. We don't sit around and discuss it all the time, we don't read DS books and watch DS DVDs and host DS group meetings and hang out with DS friends and bore our relatives with DS statistics – we don't obsess about DS the way people who really get into recycling obsess about a Coke bottle in the trash. DS is not our hobby. But DS is always in the background – in the quiet moments. Driving home from work, or sitting in my chair at night, having a glass of whiskey. I think DS thoughts. I try to wrap my mind around profound subjects. I think about Ozzie's future, my future, the trials that await us.
The joke's on me now. I'm trying my best to laugh WITH myself.
8 months ago