Wednesday, October 29, 2008

Uncomfortable feelings

Earlier this evening I went out front to call Kevin home for dinner from down the street where he was hanging out with his friend. I was carrying Finn, and outside I ran into a couple who live down the street and were out for a walk with their little girl and a new baby. I had seen the dad taking walks around the neighborhood with the new baby over the last few weeks, but this was the first opportunity that has presented itself to congratulate them face to face. I asked them when their baby (a boy) was born and they said August, and they asked when our baby was born and I told them in July (as if the whole neighborhood didn't know, since we had a gigantic stork in our front yard announcing Finn's birth for about a week, but I digress). The mom asked me if I'm having a tough time being done (this was a nice way of asking what most people are bold enough to ask us after we've had the last few babies: "So, you're done now, right?") I told her that yes, I'm having a tough time with it.

And then I found myself going on to explain that Finn has Down syndrome, and I went through the whole surgery/hospital thing. And I said that because of all that, yeah, we're done now. And she gave me a sympathetic "Ohhhhhh . . . ." and it felt a little awkward and then she cheerfully said "Well I'm sure my little guy and your little guy will be out here playing together one day." A few more pleasantries were exchanged and then they were on their way to continue their walk.

And ever since the encounter, I've just been feeling . . . I don't know. Unsettled? Sad? I'm not sure. I can't put my finger on it.

I thought I had gotten past the whole compulsion to blurt out Finn's diagnosis and history. Well, at least I don't blurt it out to every cashier/barista/teller/you-name-it anymore. It's weird though. I don't know who I should tell, and who I shouldn't. I'm having a tough time figuring out when it's appropriate information to give, and when it's not. When I allow someone to admire him and ask innocent questions about him, and I don't mention his DS, I feel like I'm being deceitful . . . or that it must mean I'm ashamed of the fact that he has DS if I feel the need to hide it. If I do mention it, then I feel like I'm giving a disclaimer or caveat about him, and that feels shitty, like I'm betraying him. It's all so confusing.

Sometimes I feel like I have to mention it because so often people comment on his size. "He's so tiny!" they all say. People are usually surprised when they ask how old he is and I tell them almost 4 months. People think he's a newborn! (Which is ridiculous because yes, he is on the small side, but he's well over 10 pounds, so if he were a newborn, he'd be a pretty hefty newborn.) People ask me if he was premature, because he's "so tiny." So then I feel compelled to tell them that no, he wasn't premature, he has Down syndrome, and babies with DS often tend to be small. All in the name of educating, of raising awareness, you might say. But it still feels icky in a way. And then I'm always on high alert trying to gage their reactions. Do they feel pity? Repulsion? Relief that it's not their kid? Or maybe they don't care one way or the other.

I just wonder when I will stop caring whether people know or not. And when I will stop caring what people think about it if they do know.

And the whole "We're done because he has Down syndrome" - what a load of crap. I don't know why that came out of my mouth. It's not true . . . not really. I mean, we decided that he would be our last long before he was born, long before we knew he had DS. (Of course the twins were going to be our last, and then Lilah was going to be our last . . .) Six kids is enough, right? In all honesty though, I don't feel done. I wish we could have another baby in a year or two. Had I started out younger than I did, I could have ended up like that Duggar woman - I think she's expecting her 19th now (okay, 19 is a little nutty . . .). But the truth is that Finn's diagnosis scares me. I don't know if I could do that again - and what if we ended up with a child with a more serious and devastating diagnosis than DS? So I don't know, I think in a way I use Finn's DS to talk me off that ledge, you know?

Crazy, it's all crazy.


Tricia said...

If it's crazy, you're in good company. I can relate to this exactly. It's gotten easier. Sometimes I tell, sometimes I don't, sometimes it's to educate, sometimes it (honestly) is to watch people squirm (terrible, I know), sometimes it this and that and a million other things. And sometimes it bothers me...a lot. Other times, it's like water rolling off my back. I wish I could tell you that suddenly it won't be a big deal AT ALL. But that would be a big fat lie.

I do know this...sometimes words just come out of your mouth. Like, we're trying to make OTHER people feel better or something. I don't know. But...I guess I am just saying "me too."

Oh...and people can't BELIEVE G is almost 2. Never!!!

Jennifer said...

You have to remember that you always have an easy out if you don't want to bring it up...all of your kids have been on the small side:-)

doulamom said...

ack!!! duggar woman LMAO!!! Michael better get that surgery.... quick...