I am the giver of social paranoia. Bwahaha…Posted: March 19, 2013
Latke and I like to make fun of things. Way back in college, making sarcastic and inappropriate jokes was some of the first fertilizer for our blossoming love.
Cue Barry White, and imagine a young couple making out on a big pile of stinky compost…
So it stands to reason that while we have been figuring out this whole my-baby-has-Down-syndrome thing, we have made some jokes along the way. It helps, you know? It helps to make the fear less potent. Fear of what? I don’t know really. Maybe the same fears I have for all the Taters. Every parent wants their kids to grow up happy, accepted, and healthy. Imagining any of those things not happening is, well… not what a parent wants, let’s just say that.
Here’s the thing. I think that I’ve given ya’ll some social paranoia. And by ya’ll, I mean our friends and family, and maybe some others who have stumbled upon this blog. When we started thinking that LP had Down syndrome, we were sad. Like our midwife said so wisely, no one checks that box. We had no idea what Ds really was, and a quick Google search of the health implications scared the bejesus out of us. As we tried to get ourselves together, we started realizing that most of what we feared wasn’t even true. Then we sent y’all an email telling you the news. It must have been hard and confusing for some of you to get that email.
I get it.
As much as I try, it is really, really hard to describe what has happened to us. Harder than getting Mouse to stop talking. Harder than convincing Chipmunk that every dog will not spell her ultimate doom. I wish I could take you all along for the ride, because despite the hard and scary parts, it has opened my eyes to the world in a stunning, miraculous way. It is kind of like watching your life on a regular old television, then someone switching the high def on. Things are more… well, just more. The beauty is more. The sadness is more. The lines between seem clearer and, at the same time, not even there.
I think those of you who have already had some experience with disability (even if it wasn’t Ds) had some more familiarity with the terms, lingo, culture of it all, and this sounds much less confounding. But let me venture out on a limb and say that many of you, dear friends and family, sat at your computers that day and really dug deep to find the right words.
Maybe you thought we were valiant in our attempt to be positive. Maybe you thought we were lying to ourselves. Maybe you were just sad and didn’t know what to do. Maybe I’m wrong and everyone just took it in stride and it was no biggie. But I’m doubting that.
I just want to tell you, dear friends and family, that I understand. It is just that we are going to need to make some sarcastic comments along the way. I really hope this doesn’t paralyze you with social paranoia. I understand it is hard to know what to say, and hard to imagine what will be ok and what won’t be ok. We will say something if we are upset. We are big proponents of honestly. It has always worked pretty well for us.
We like hearing that you’re not upset about LP’s Down syndrome. We don’t mind when you tell us how cute/funny/adorable he is. We don’t mind questions. We don’t mind empathy for the hard parts. We don’t mind offers of help, exotic whiskey for Latke, or massage gift certificates for me. We like hearing from you. It is ok if you can’t, but we like it if you can.
We do mind pity. We hate pity. We do not want our son, or our family at all, to be the subject of hushed, sad discussions. We don’t want you to be thanking your lucky stars that “at least it didn’t happen to us”, because that is not how we feel about it.
We do not want you to see only Down syndrome whenever you see LP’s face. We just want you to see a little boy, with cute dark eyes and really hilarious toupee/faux-hawk hair. For reference, I have included this picture. I know you have seen it already, but isn’t it a hoot?
In the meantime, we might avail ourselves to some humorous asides, for the sole purpose of entertaining ourselves. Please laugh with us. Don’t feel bad. We mock our older Taters behind their backs all the time. We also like to make a lot of Jewish/Asian jokes, and a lot of stuff about being psuedo yuppies living in East Oakland. I encourage you to find something that makes you feel marginalized and join us. Then tell us how awesome LP is.