Saturday, May 4, 2013

who she is.

the other day my big came to me to show me her hands.
'mama, look.  i have lines on my hands.'
'i know.  see, mama does too.  how many lines do you see?'
'one. two. three.  i have three lines on my hands.'
'so does mama.  let me show you something about shilo though.  see her hand.  she only has one line.  most people with down syndrome only have one line on their hand.'

big is mostly unaware of shilo's differences. she knows she has down syndrome.  she is completely unaware of what that means, and how that affects her sister. i like this about her.  it helps even out nights like tonight where my heart swings between aching and anger.
i know that we live in a world that has a hard time knowing what to do with people like my little.  they look at her, and immediately her labels jump out to them.  and i get it.  when big was first diagnosed, i noticed every cafe au lait spot, every new armpit freckle, everything.  that's all i could see.  and the first few weeks with little, her down syndrome really stood out to me.  i don't necessarily expect strangers to be able to move beyond those labels easily.
there are other people though.  people who see her somewhat regularly.  people who read my blog, or are friends on facebook, or even who know me in real life.  and somehow they seem stuck on labels.  stuck on the delays.  stuck on her being deaf.
we are aware of these things.  but, that's not what we see.  that's not what we experience.  and that's not our daughter.
our daughter is super silly and loves to make funny faces.  she has a very animated angry yell when you stop doing something she wants you to do again.  she loves to play peek-a-boo.  she likes to hug her baby...and then shake her and throw her.  she's a mama's girl.  her beautiful blue eyes could get her just about anything she wanted from us.  thankfully, she hasn't yet figured this out.  she loves whipped cream.  and suckers.  she thinks her sister is the funniest.  she has a beautiful smile, and somehow she does it with her whole body.  she loves to snuggle in on your shoulder when she's tired, or just wanting a hug.  she gives awesome sloberry kisses.  sometimes they have some teeth to them. she is the most stubborn human i have ever interacted with.  her reaching with her arms to get picked up works every time.  she loves to wait until we are out of the room to get into things she isn't supposed to.  she loves snuggling her blanket at bedtime.

it's not hard for us to sort of push those other things aside as a result.  we forget them even.  when we look at our little, we see only our daughter.  because, that's who she is.


  1. Hey, I just found your blog by accident searching for an image of a baby wearing a hearing aid like the one your daughter wears. (I hit the jackpot here--Shilo is soooooo cute! My 6-month old has Down Syndrome and conductive hearing loss and we are in the process of sorting out whether or not there's anything we can do to alleviate the structural issues in his ear and a hearing aid may be in his future.) Anyway, what I really wanted to say, is that I love this post. I've read other attempts at articulating this issue, but so far, this is the closest to explaining how I feel. So, thanks.