21 March 2014

World Down Syndrome Day 2014

Two years and ten months ago, I sat in the NICU and stared into two little blue eyes that would change the course of my life in a way I couldn’t possibly understand. And over the course of those two years and ten months, not one person has ever asked me what I thought.

Plenty of people, from family to complete strangers, have showered me with their own thoughts on Down syndrome and what they think it means for my daughter. And even though no one is asking me now, I’m going to share anyway. Because today, my friends, is March 21: World Down Syndrome Day – the day I break out the pompoms and soapbox.

So what do I think of Down syndrome? I think lots of things at lots of different times, but everything is best surmised by talking about the two things I think Down syndrome isn’t.

Spoiler alert: the first one is kind of obvious. Down syndrome is not a curse. My daughter is not a burden, her life is not constant suffering, I don’t get depressed when I think about my future, and when I look into her blue almond-shaped eyes on World Down Syndrome Day 2014, I think the same thing any mama thinks when she look into her own child’s eyes: I would do anything for you.

The second thing Down syndrome doesn’t mean is the more controversial one. Because in my world, what I think of my child and what I want for her can be controversial.

Down syndrome is not a blessing. Abigail is a special-miracle-blessing-from-God in the same way that all children are special-miracle-blessings-from-God: because she is made in His image and likeness. She is not always loving, happy, and na├»ve because she is not a puppy dog. She loves babies because she is a girl. She doesn’t hug strangers because she doesn’t like new people to get too close to her. So when the loving, well-intentioned elderly woman at church comes up to Abigail and gives her a kiss and says, “You’re such a special little girl,” I cringe. Because that sweet woman is not seeing my daughter. She’s seeing an extra chromosome. And that hurts my mama-heart.

So what do I think of Down syndrome? I think it’s neither a curse nor a blessing. It’s a genetic abnormality; a fluke that happened at conception. Down syndrome affects Abigail’s health in a negative way and it presents struggles in her development. And that’s about all I think of it. Abigail is still Abigail. She loves books and kitties and sparkly shirts. She hates vegetables, having to hold someone’s hand in the grocery store, and running out of pudding cups. And much to her daddy’s dismay, she’d rather listen to Taylor Swift than Garth Brooks.

There are lots of things I hope for with regard to Abigail’s future that most parents probably don’t think about. I hope she never needs open-heart surgery again. I hope we avoid the increased chances of leukemia. I hope she never comes home from school and asks me what the r-word means because she heard some kid use it as a slang word. But at the end of the day, when I’m old and gray, I don’t hope she’s just happy. I hope she finds her purpose in life. I hope she hears God’s calling. And I hope she fulfills it.


Cam Wollner said...

Your last three sentences made me all teary! They exactly sum up how I feel about Mae's future and the unknown looming ahead.

Anonymous said...

Absolutely beautiful.

Beth (A Mom's Life) said...

Beautiful. Just beautiful.

Blogging to Bless said...

Tears the whole time. Thank you for your honest perspective.