Tuesday, November 3, 2009

Hi. I'm Gonna Ramble Now.

After that marathon month of posting, I just kinda fell off, huh?

I guess a teeny break was warranted.

We had a busy weekend, leading up to my departure for more reserve duty. I swear, I'm usually not gone this much. It's just a fluke of a thing, really, that this happened - me being back in NY after just being here in May - and I'd much rather be home. Honestly.

The good thing is that I have great friends nearby and they're happy to keep me entertained after my training is done most days.

Sunday was pretty quiet. I was up super-early after two nights of Halloween parties (thank you, Daylight Savings Time) to catch my flight and was pretty tired by the time I landed, got my rental car, and was settled in my little dorm room.

Last night, I took the opportunity to get some groceries so that I could make halfway decent food choices while I'm away from home. I made a rule that while I'm on LI, I have to eat right. All bets are off when I'm in the city.

Hey, I'm human.

Tonight, I took the train into Manhattan and had dinner with friends. I love the feeling of a city. Especially this city. It's so different from where we live now.

Understatement, I know.

Granted, just as we are starting the countdown to moving on to the next duty station, I'm already starting to feel like I'm going to miss our little town so much. 11 months to go...

There are so many things that I meant to talk about during 31-for-21 that I just didn't get to. I will though. In time.

One thing I will share now is that I'm glad I did it. I'm glad that I've shared what I've shared with everyone that reads here. Every once in a while, someone tells me that something they've read has made a difference for them and that's the best thing I can ever hope for.

I'm not here to tell everyone that they should want to have a kid with Ds. That's surely not my point, though it wouldn't bother me at all if you did. I guess what I really want people to know is that, above all else, Playette is a kid. She's not special-special, she just is.

Wait. Do you know what I mean by "special-special"? This might be a futile effort, but I'll try to explain: Of course, Playette is special to us, her parents, and we love her. And plenty of other people love her too, which is amazing. She is special to all of us. But what I'm referring to here as special-special (and I can't take credit for creating this term) is what's kinda like when people say things like, "Oh, she's so special. (Bless her heart.)(Special children are given to special parents.)" You know what I mean? It's patronizing. Saying that someone you don't know is "special", especially when that person has a cognitive disability, comes across like you think that there's something that makes this person uber-special, or special-special, which isn't like thinking they're special to you at all. It's different. You, and I use the general "you" here because I can't think of another way to phrase it, think they're different and you're just trying to find something nice to say. Which...I don't blame people for. But please know that parents notice. Friends notice. I don't think of my daughter as special-special. That's what other people may think of her, but not me. The goal here is acceptance and inclusion, not special.

I don't even know if that all made sense.


Where was I?

I guess what I really want people to know is that, above all else, Playette is a kid. She's not special-special, she just is.

And if more people can begin to see that kids with Ds are more like those without Ds than they are different, then those people won't be as afraid. It's alleviating that fear of the unknown that I want. It's painting a true picture. Not doom-and-gloom, not all rainbows and kittens. Just showing you us. Living. Loving. Being. Fighting for what we believe in. Making mistakes. Not walking around with Down syndrome tattoos on our foreheads or even talking about Down syndrome every day. That's not how we live. We face challenges and celebrate accomplishments just like any other family.

I've been told by more than one person recently that getting to know Playette has led them to think about things in a different light. They've had conversations with their spouses that they might not have otherwise had. They're no longer afraid.

That right there keeps me coming back.


Cate said...

I got a little teary reading this. Beautifully, beautifully said.

Michelle said...

I totally get the 'special-special' Comment like the ones you mentioned, and 'gift from God' and etc etc that we get all the time would always make me uncomfortable. She's not all those things BECAUSE she has Ds, she's a 'gift from God' because she IS. Because if having Ds makes her 'special special' and makes us 'special parents' (which by all means I'm NOT. Not at all), then what does that make Lucas? Is he not a gift from God too? Is he not special to us? Did God not give him to us because we can 'handle' him? (Sometimes I wonder about that!) LOL So yeah, I get what you're saying - Kayla is not going up on a pedestal because she has Ds...she is not more angelic because of having Ds...and she is not anymore special than Lucas is to us. Sorry, didn't mean to take over in comments LOL

Carrie said...

Great explanation of "special-special". It was spot on. Sometimes I think people treat Miss B like rockstar b/c she has Ds, instead of because she IS a rockstar. And then it makes me think that when they look at her, all they see is Ds instead of the awesome little lady she is.