I have a kid with Down syndrome. So what? Everyone who is in my life knows that by now, and by being around us they know what that really means. Which, frankly, isn't a whole lot. It means he's doing things more slowly, can't communicate as well as other kids his age, yada yada. This post isn't about that.
When I'm in adult social situations, around people I've never met before, having a kid with Down syndrome becomes more complicated. It's complicated because most people know nothing about Down syndrome and what they think they know is usually extremely outdated or just plain, wrong. So, I usually don't mention my youngest son's diagnosis when I'm out and about in these new people situations. Let me be clear, I am NOT embarrassed about it. I just can't stand the feeling of all of the air being sucked out of the room with a giant "Whoosh" when it does get mentioned. Then, I have to quickly assure them that I wasn't given a prison sentence with my child and that there are many things about it that are positive (being faced with my own ego, taking life a little slower, celebrating the milestones more, gaining perspective, etc.) But, it's really annoying to have to do this and most of the time I just want to have a cocktail and enjoy the adult conversation.
I was recently out with a group of Moms for a Girls Night Out at a restaurant. These Moms and I all have one thing in common: We all have a child with Down syndrome. The waiter was coming back and forth bringing us things and engaging in flirty, clever quips with us. Once we all arrived, he asked if we were celebrating something special. A few responded that No, we were just out to get away from the kids. Then one friend says, "Well, actually"... and I tensed up. Here it comes. "We all have a child with Down syndrome!" Whoosh!! And there goes the air. He covered well, but he didn't respond with the same jovial nature he had responded on all previous exchanges.
There are times when I'm out in a new social situation where the conversation is long enough, relevant enough or deep enough that it warrants me sharing a little more about my life. But, I always hate that first moment- the moment before they realize that it's all good. I was at a friend's birthday party, and was having a fun and fascinating conversation, wine glass in hand, with a group of people- a mix of a couple friends and a couple of people new to me. The conversation turned to kids and parenting. The way the conversation was going, I was either going to have to change the subject or mention my son's diagnosis, so I said something along the lines of, "My youngest son is 3 and just started walking. He has Down syndrome, so it has taken him a little longer to "get there". The guy I was talking to, immediately lost his smile and shifted to his serious face. One of my friends quickly saved the moment by saying, "Jen has a great blog where she writes about her experiences with her kids." Up walks a woman I don't know, who hears the tail end of this statement, and she practically shouts, "You're a MOMMY BLOGGER??!!"
Me: Umm...yeah, I guess so.
Her: I LOVE MOMMY BLOGS!!
My friend: (introducing us) So-and-so this is Jen
Her: OMG!! You're Jen?? Of "Jen's List"????!!!!
Me. No!! Oh God NO. I mean...I've gotta hand it to Jen of Jen's list, but that is definitely not me. No, I just write about....my kids.
I decide that there is no way I'm bringing up the meat of what I write about in my blog. Based on how loud and how enthusiastic she was, I didn't see THAT conversation going in any direction that would have been good for me.
Sometimes I wonder if I like the mystery. Like I've got a good "secret" to share- something that's just a little bit different from everyone else. Almost everyone has a story. And like every good story, it takes time to unfold. I have friends who tragically lost their spouses, friends whose parents were taken from them at a young age, and even recently learned that a friend ended up in a cult called the Folkolare because she didn't have enough extra curricular activities. These are things you just don't blurt out upon first meeting someone. Because if you do, you will be met with the Whoosh of air leaving the room. And those of us who have "stories"? We don't really want to have to do damage control over the perception of our lives.
So, what should you start off with in a conversation with someone new? I think I'll try opening with this one, "One time, I accidentally asked a woman if she was drag queen."
Now, "the Whoosh" that accompanies that is a fun one to explain away...