Thursday, March 21, 2013

Happy World Down Syndrome Day!

This is a special day.  A day to share with the rest of the world that a diagnosis of Down syndrome does not have to be scary.  It doesn't mean that your family is going to be taken away from, as in no longer 'normal' or no longer hopeful or no longer having high expectations, rather that your family will gain from, as in joy, light, excitement, love, compassion, empathy, a fuller life.

The statistics are staggering.  Only around 10% of those babies identified in utero as having Down syndrome live to see their birthday.  Most of the 90% are aborted.

As a mother of a precious, amazing baby boy who also happens to have Down syndrome, I feel it is my job and duty to spread the word that these babies, these children, these people have so much to give.  Their lives are worthwhile.  Our world is a richer place because these children are in it.

 The theme for this year's World Down Syndrome Day is 'Who I Am'.  Take a moment to get to know someone in your community, your church, your family who has Down syndrome.  It's amazing how things are much less frightening when you are able to put a face and a name to them.

This is Asher.  He has Down syndrome.

And he's ready to party on this World Down Syndrome Day.  Anyone want to dance?

Wednesday, March 13, 2013

Of Water And Poop

Tonight we began Phase 2 of Caedmon's bowel management program.  It was another lesson, in a long line, on how the key to parenting is not that my children look/act/behave like other children but that they are as independent and self-sufficient as they can possibly be.

That must be the weight I carry with my amazingly special kids.  I'm wanting to let go of it.  Letting go of the need for them to, for whatever reason, end up not needing to be too different, not too special.  If he could just poop on the toilet like most other people then it would make everything else seem better.

It helps to have a pediatrician who speaks candidly, 'Look, this is the way it's going to be.  He'll need another surgery when he's 10 or so but it will totally change his life to be able to do this on his own.'

Yeah, but he was supposed to not need these things.  He was supposed to be the one that was that medical miracle.  The one that you read about in all those forwarded e-mails or Facebook stories.  We prayed and his body just miraculously changed and now he doesn't need any surgery ever again!

Except, that's not really how those stories turn out.  I mean, you see a snapshot of someone when something wonderful happened but the truth is that even those people grow old, their bodies start shutting down, things quit working how they were supposed to.

Because everybody gets old, eventually.

And everybody needs more help, eventually.

And everybody has to learn how to navigate through life with as much grace and charisma and chutzpah as they can muster with the abilities and limitations they have at that particular moment in their life.

And some people can do it, really well, and some people fall flat on their faces.

And the amount of physical or mental ability or disability has nothing to do with whether they will be graceful or klutzes, what matters is do they have the tools, have they learned what they need to learn to do what they can to the best of their ability. 

So, my son can poop because we put a balloon into him, shoot some water up into his colon and wait for it all to come down.  He's never going to experience a potty training party.  But we sure as hell celebrated every time we heard a kerplop! tonight in the toilet.  He doesn't know what it's like to push until something comes out.  But he enjoyed me leaning down with him and putting my arm around him to make sure he was leaning enough, putting enough pressure on his tummy to get things moving.  He said I was looking out for him.  The rest of the time on the toilet, whenever he needed to 'push' he'd ask if I could 'look out for me again'.  We would lean down together, our heads touching, my arm around his back, his giggle-breath on my cheek, and we'd wait for the sound of water or poop.  Then we'd sit up, give each other a high five, regardless of what came out and wait for the next time to try.