The May Nest

yesterday was world down syndrome awareness day.

i might have noticed about every 10 years or so, perhaps if someone tweeted about it . . .

except that 2 years ago, a little bundle of love, one with an extra dose of chromosome 21, was born into our lives . . . and i am now acutely aware of things like World Down Syndrome Day.

when jax was less than two weeks old, we were introduced to a family with a sweet little 18 month old girl who had down syndrome.  we bundled up our tiny infant and made the longest 3 mile journey i’ve ever made. jonathan drove and i sat in nervous silence while our minds raced and spoke louder than words ever would . . .

i remember sitting with these dear friends we had just met, tears pouring down all our faces as i asked inappropriate questions like:

are you supposed to say, “my kid has Downs” or do i just say Down syndrome?

am i obligated to acknowledge the elephant in the room to everyone (aka strangers in the produce section of central market) that yes, indeed jackson’s gorgeous blue almond eyes means he has Down syndrome?

does it make you angry now when you hear the word retarded?

does it mean he won’t get invited to the other kid’s birthday parties because he looks different or he can’t keep up?

will it mean that a neighborhood mom won’t call me to join them on a stroll because she’s embarrassed?

in the quietness of their living room, her words pierced me, “Mica, there will never be a box for you.”  just like that. she said it. air hung on those words as i let them sink in . . .

and she was right.  while these past 2 years have been full of joy, there have been those little fleeting moments of uncertainty, where i’m just not quite sure where i fit in.  it’s those little moments where i’m learning what awareness is really all about . . . like when people ask his age, quietly wondering to themselves, “shouldn’t kids be able to walk by 2 years old?”  or when i’m in the waiting room at the pediatrician and i nervously laugh that oh, yes he’s 2, but he’s not really talking yet . . .

sometimes i throw it out there.  ya know, like the “i know that you know know i know” sort of thing.

then other times, i don’t feel the need to explain anything,  and so they quietly wonder.

there are things i still don’t know.

i’m not sure i’ll ever be ready to read books on Down syndrome or hear about “so and so’s cousin” with DS who is working! at a grocery store!  they say it with 2 exclamation points like i should be looking forward to my jackson being a bagger at kroger.

and here’s the deal.  if it makes HIM happy, then by all means, he can work and do as he pleases.

but right now, he’s 2 years old.  he delights in the magic of balloons.  he could watch toy story 3 every day if i let him.  he sequels with excitement when i open the front door at the adventures that await us out there.  he whines in his carseat until i play Ceo Lo Green’s “Forget You” or some other ridiculous pop song that i’m sure makes me a bad mother.

and while i’m quite positive that before 02.15.09, on multiple occasions i said some version of, “Oh, don’t be retarded!” i don’t feel sad, because i simply wasn’t aware of who might have taken offense at the R-word . . .

good ole’ websters says awareness means “concerned and well-informed of a situation or fact”.

in the past two years, i could have never guessed that my list of things i’d be “well-informed” about would be things like SureSteps, proprioception, Nystagmus, and ocular Torticollis.  but alas, not only has my vocabulary grown, but my capacity to extend grace towards those who are simply, unaware.

so, my jackson, thank you for opening my eyes to the simplicity of ball pits, balloons blowing in the breeze, and the glorious feeling of new spring grass running through our fingers.  i’m pretty sure i’m a better mother because of you, and i can’t wait for all the other things you will teach me along our way.