Tuesday, October 14, 2014

brush your teeth

I've been contemplating this post for 14 days.  October is Down Syndrome Awareness month and as such many bloggers are writing beautiful stories about their lives and sharing their love for their babes with an extra chromosome that has enlightened their life and well I sat here thinking, REALLY?  I need to advocate on why this guy deserves to be here?
 It seems so odd, so redundant.  Like, 'Hey brush your teeth if you want to keep 'em!'.  But, that is our reality isn't it?  Wow.  It stuns me to think; that was me.  I had a 72 hour window of knowing I was about to give birth to a little baby with down syndrome.  All that swirled in my head was awful, horrible, tragic, life changing images.  Nothing positive.  Literally nothing.  It's disturbing really, because it isn't reality.  And that is where I like to dwell, in truth.  The truth is-he is a beautiful, happy, silly, sometimes a naughty little boy.  I didn't know that.  Our society wants to take anything worth working for, anything that is less than perfect, anything that will be a tad more difficult and say, "whoa- who wants that?!".  So, I didn't.  I wanted to run away.  I wanted out.  I can see how so many mama's make that choice.  I don't judge it, I completely understand it.  We are programmed with everything in our lives to find better, do better, for ourselves.  If your marriage doesn't make you happy, get a new one.  If you don't like your job, quit, life's too short.

But, in reality, life's treasures are earned, worked for and sometimes suffering is a part of that.  It wasn't difficult to fall in love with Nolan, that was the easiest part of this journey.  And I thought it would be difficult for others to do the same, and well, that was totally not true either, everyone I encounter loves Nolan.  Not because he has down syndrome.   Because he is Nolan.  He radiates love and acceptance.  He makes people smile, all people.  All of the time.  Our kids are shy, both Jeremy and I were shy as a kid and well not so much anymore, but Graham and Audrey definitely.  If you know our family, you are so happy when one of our children greets you with open arms, because it probably took 4 years of knowing them to do so. But, not Nolan, he runs and gives kisses and hugs freely.  He fills everyone's love tank daily. 



 As I sat in the hospital bed with his new little baby scent and soft baby skin.  It was perfect.  It was all that I dreamt of.  It was the world that I didn't want to take him into.  I remember hiding him in my baby carrier, hoping no one noticed.  Happy if anyone told me that he "didn't look like it".  Now I cringe at those thoughts.  Can't imagine being ashamed of my sweet boy.  But, I wasn't.  The world is.  The world see's him as less than, and therefor we all do.  That isn't right.  Forget fair, forget politically correct.  It isn't right.  He deserves your respect and love and attention like any of our children. 


Graham said to me this morning the first time ever that he just randomly brought it up, "If Nolan were regular (insert cringe here) would he like and be able to play Lego's?"  First of all we talked about what 'regular' meant and then I said that yes, he would be able to and probably like Lego's.  He then followed it up with, "I just wish one of the babies were 'regular'. So, I could play Lego's with them".  I cringed again, but understood his point.  The conversation quickly moved along, but it was swirling in my head today.  This is what I talked with him about tonight.  That we don't know how we are going to get along with our brothers or sisters.  That I barely talk to my sister and we are different people.  Doesn't mean she's bad or I am bad, just different.  It is a gift when we truly enjoy the same things and play the same games with each other regardless of our abilities.  And it's true. 
 There will be many more conversations I am sure about what is different or annoying about having brothers with disabilities.  But, we would do this anyway, with any brothers.  We all love and loathe numerous things about all kinds of people, their intellect has very little to do with it. 
 I can't say that I get the whole magical unicorns and rainbows of down syndrome.  I wouldn't preach it like that, because to me, it's a tough job raising kids.  It takes all of your heart and soul to try day in and day out to be the best you know how and whether or not they have an extra 21st or 9th chromosome doesn't really matter.  They still make you smile and melt and scream and shout. 


I thought and imagined that our family would be "different" that our friends wouldn't want to be with us anymore, because our kids weren't like theirs.  I know it sounds ridiculous to our friends.  Because it is ridiculous.  I wish I could take a mama with the news of any baby with struggles or differences and show her our life.  Our wonderful, beautiful life.  It's not because it's easy.   It's not because we are amazing.  It's a choice.  Happiness and love are choices and actions.  We live.  All of us.  All of the time.  We have fun and welcome all people into our home.  And if you were invited your would see we are a family, complicated, messy and so full of love (and stiff drinks!).  This life is all I dreamed it to be, the only missing piece is the rest of the world.  So, dreaming big and starting small with all of you. 

 So, yeah, brush your teeth if you want to keep them and love people for who they are and what they offer this world.  We are all just trying our best. 






3 comments:

  1. Grace! This is my favorite post of yours of all time! It is so, so, so very perfect. I couldn't have said it half as well as you have here.
    I have been struggling a lot lately to sit down to write about Annie. And honestly, I think it's because I am *issed that I even feel like I have to. She is Annie and she is happy and loved and loves because she is Annie, not because she has Down Syndrome. And yes it is hard! But show me a child that isn't a bit hard to raise. Who said easier was better?! I feel all the things you describe here about your family about my own. "We are a family, complicated, messy and so full of love!" I love it. Thank you so much for this. And thanks for sharing your beautiful family. You all are stunning!

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  2. This is the third time I have read this post...By far my favorite written by you. It's beautiful and perfect. And the pictures? Amazing...All of them. You have such a lovely family.

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  3. Beautiful post and absolutely gorgeous pictures of your family!!!

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