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three, two, one . . . (3.21)

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.

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i remember when i was pregnant, it seemed like everyone else was pregnant too.  or when i wanted to buy a navy car and thought, nah, i never see those on the road, they started appearing everywhere.  that’s what awareness means to me.  you are suddenly in tune with your surroundings.

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 . . .

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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.

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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.

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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.

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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.

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Show Hide 8 comments

Ann Piper - I love your perspective, friend. So many of the things you shared are just how I feel about raising a child with autism and epilepsy. You’re exactly right that raising kids who are on a different path than most can really make us better moms. And it’s made me a better Christ-follower. My boring, check-the box, ‘long-term planner’ mentality has been replaced by a more adventurous and dependent faith. What a gift. Much love to you and the entire May crew today. — Ann

Vickie Otts - Micah, What a beautiful post. I love your honesty. I know there are days that seem unfair and hard, BUT I also know that God is sovereign. God gave Jackson to you and Jonathon because her knew you would be the perfect parents for him. He knew you would be aware and love him and nurture him to be all God has intended for him to be. I believe that God has big plans for Jackson. I don’t know what, BUT He doesn’t make mistakes. His precious spirit and joy are there for you every day to enjoy. I think we would all learn to be aware more, but maybe as seen through the eyes of Jackson. I think he sees life with a joy and innocence that should all experience. Maybe that is just one way he will teach you as parents and those that he meets. Love you both and your sweet precious family. Also, love to read your posts!!

Christy - I love this post and am thankful to hear your perspective. I am teary as I know your pure joy for your son and even more so when I think he is the one who could really teach us all so much about pure joy, delight, and acceptance. Many blessings to your family!!!

Jen - This was a beautiful post and I really enjoyed reading about your journey with your precious son. He is adorable and the grace and love in which you are walking is inspiring. Thanks for sharing!

Maria Teresa G. Pedroche - Hi Mica,
Thanks for sharing your stories. I look forward to meeting your family and sharing the art museum with Jackson.

Jill - You have such a gift of writing. This post brought tears to my eyes. What joy you have, through the graciousness of the Lord, in your precious little Jackson. Thank you for sharing your heart, your experiences, and being so honest. It’s humbling to read, and there is no doubt in my mind that God knew exactly what he was doing when he created Jackson in his mother’s womb. He is fearfully and wonderfully made, just as we all are!!

Anna Brindley - Beautifully said and so resonates with me. So grateful to have made your acquaintance.

D - Just have to tell you how precious, adorable and cute your little boy is!!
God bless,
D, Mother of 5

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