Friday, March 20, 2015

Happy World Down Syndrome Day and Stuff (It's Probably the Drugs Talking)

Although I am currently sitting with one leg up on the coffee table, Robaxacet and a shot of Toradol on board, an icepack on my sciatic nerve... One butt cheek propped on a couch cushion, in my new home in the middle of the frozen Arctic... Don't think that I'm not aware that tomorrow is World Down Syndrome Day.

It's the most Holy of Holies in our little corner of the disability universe.  The day.  The big one.  Blue and yellow will be everywhere and Sedna help us, we are still with the mismatched and "silly" socks.   There will be pride, yes... and there should be pride.  The extra chromosome, the condition, the disability, the whatever-you-want-to-call it, the thing that is Down syndrome, does not preclude one from their humanity, their right to happiness (and the ability to seek that happiness). 

Pride.  Yes. 
Be loud and goddamned proud.

I'm also very aware that I don't get to hold my son every day any more... that would be the hazards of isolation nursing, being away from your family for long periods.  But, that doesn't make me any less involved in his parenting (even though I am physically thousands of miles away from him).  Ahhh, my little man and his newly found skills...  In the time since my last post, he is now walking and running.  He is talking more and although he has always been very good at getting his point across using a combination of sign and Wyatt-sign and sounds and body language, he's decided to go with words.  Which is cool, because that's how I communicate most of the time too.  I say most, as I have to admit that I do use a lot of non-sensical grunting, hand waving and sighing most of the time.  I just tell myself that it's part of being the mother of three kids.  Or a psych nurse.  Or something.  Yeah...

I have a lot of pride for him too.  I'm proud of all my kids.  Every time they figure something new out or add a new trick to the repertoire, I'm on about it for days.  They amaze me, these little people.  It amazes me that my eldest can rhyme off the first 10 elements of the periodic table.  It amazes me that my daughter, who is the spitting image of me (only prettier), can climb almost anything and completely destroy a room in under 30 seconds... and convince you that it is all in good fun.  It was no less amazing to find out that Wyatt, the guy who wasn't allowed to hold the phone for the longest time as he would press all the buttons and hang up on Mommy in Nunavut, decided to call both my BFF and my mother and have conversations with them both.  Just, y'know... because he was bored.  And he could.  And eff anybody that thought differently.  They might have not gotten the full gist of the conversation, but man, he was as pleased as anything at the results.  And so am I.  Way to show us up, dude.

There's a lot of other things that I'm aware of too, despite my new postal code and our flighty "InterNOT".  The 'new and improved asylum' debate (like that is somehow up for debate).   The sheltered workshops issue.  That cute is still king, supposed superpowers, angels and pedestal ableism, the r-word, the tragedy rhetoric that is still every-blessed-where, and somehow, in some way, devaluing or marginalizing a group of people is ok, because, y'know, that's your opinion and that fact alone somehow warrants validity. 

Oy.  I may need more pain killers for that lot.

I haven't written anything here since November.  I'm aware of that too.  That doesn't mean I've faded off into the sunset (or wandered off into a northern blizzard if that analogy is more appropriate and to your liking).  I just haven't had the spoons or the words to say what I've been mulling over.  That time is coming again, thankfully.  Once I get off this couch, that is (I've resorted to lying on my side and typing now).

There's a whole lot of awareness. Up. In. Here.  But, as I've said numerous times, that alone really doesn't do anything.  Getting better and finding my spoons and doing the education through the advocacy... well, that changes minds.  Making sure that both my twins are included fully in the classroom this fall, not just one of them... well, that is doing something.  All the little considerations and leanings in that I do... those help too. 

This is about as aware as this World Down Syndrome Day is going to get for me.  If I do get off this couch at some point, I may shuffle off into the sunshine and visit some friends.  I may wear socks too, but only because it is still -30 here and only in my boots.  I will Skype my family later on and hear of the day's discoveries and accomplishments.  The subject of Down syndrome may or may not come up.   But if it does, I'll answer questions to the best of my ability (as I generally do). 

It won't come up with family because Down syndrome is just an is at this point.  It's not the elephant in the room.  It's no longer the "we have to do this and this because of that" thing.  It's just one facet of my son.  It's a tiny part of our busy life.   It doesn't make more or get in the way of any of the love that is already there.  He's a boy, doing boy things and taking part in the world around him.  Like we all do.

That's the part that I wish more people understood. 

Happy World Down Syndrome Day

Ugh.  I can't even...

1 comment :

  1. Yes. I didn't even know about World Down Syndrome Day until 4 years ago - and as you may recall my son is 24 now. (course WDSD has only been around for 10 years, but still) My point is that we just lived, and our "advocacy" was just being a family, who and where we were. Day by day.
    Now I know more and talk about more, I've learned a lot from you, for example.
    But we still, Marcus and his dad and I , mostly just love and laugh and enjoy each other as families, the lucky ones, do. That ramble aside, I do love that we now know about WDSD - we truly have celebrated at our house. :) In other news, Hope you feel better soon.


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