A Poignant Perspective

A while back, my friend sent me a link to a blog she had stumbled upon while browsing the internet. This blog is written by an amazingly talented photographer and writer named Kelle Hampton. Kelle recently gave birth to a sweet, beautiful baby girl named Nella who just happens to have Down syndrome. If you have some time (and a few tissues) you should read her birth story. But in the meantime, I think her perspective on her daughter's diagnosis is so compelling and poignant. I only wish I felt this way about some of the challenges I've faced in my own life.

"On Down syndrome

The title of this post may surprise you. Because it surprises me. Because...I forget. The two words that felt so heavy months ago, like iron chains that shackled me and pulled me beneath waters that choked and suffocated me until I almost drowned. They're gone, those shackles. I float happily now, light and free, aware of its presence in our lives but...well, just that. Aware.

This is what I wanted. As I was scraping away layers of who I was months ago, discovering our new meaning, rearranging things in our life and finding a place for the new term to live in our spaces, I hoped I'd end here. That life would take center stage and Down syndrome would move to the back like a stage assitant whose name appears in small print at the end of the credits. I searched the Internet for families that did it like I wanted to and put band-aids on my heart when I found them...familes that moved on and loved life--the ones that you'd never know "it" happened to them unless you dug a little deeper. Families that were not defined by it. And it happened on its own. We became that family, the one I wanted to be.

But every once and awhile, it appears. Last night as she was playing, grasping toys and waving them in front of her. And her movements were a little choppy, up and down, up and down, pounding her forearm to her chest like a hammer. And Brett looks up at me and says, "Is that normal? That choppy movement? Or is that Down syndrome?" And for one tiny little second, my mind starts spinning. Is it normal? Did Lainey do it? What if it's not? And I want to Google it, but I don't know what to search. And I don't want to see what it says. And I laugh it off and go to bed but it's 6:00 right now and I'd be lying if I didn't say I woke up early and have let the bus hit me again. It could have been a light and easy hit, but no. I asked the driver to hit me hard. "Smack me real good so my body flings up in the air like a dummy and I hit the pavement hard on the way down," I tell him. And he obeys.

See, I don't usually think this way. In fact, I was commenting to a friend the other day that my acceptance of Down syndrome is much like her acceptance of having two boys. Like sometimes it will hit her for a moment that she never had a girl. And for one second it might be sad...that "I'll never know what it's like to have a girl" feeling...but then instantly comes this love for her boys and she smiles and moves on. The same argument could be made about only having girls and never knowing what it's like to have a boy. And that's just what it's like for me. Mostly I don't think about it. But sometimes, for one second it will hit me..."My daughter has Down syndrome," and my throat will start to tighten and for one second--one tiny, tiny second--it hurts, but right before it closes to the point of robbing my oxygen, it opens back up--as quick as it closed--and I breathe. "Yeah? So what. She has Down sydrome."

My friend might never know what it's like to have a girl. I might never know what it's like to have a boy. And I'll never know what it's like to have a Down-syndrome-less Nella. But there's a lot of things we'll never know. Every choice we make eliminates another. Random as it is, I'll never know what it's like to be married to an Asian man, an Australian man, a British man with a sexy Hugh Grant accent. I'll never know what it's like to get wasted on my 21st birthday. I'll never know what it's like to have triplets or to travel around the world before I get married. I'll never know what's like to be a natural blonde. And I'm not going to cry about any of it because there's a million random things I'm never going to know, and everyone's life is custom-made for them. And when I hear about moms who kiss their babies before running to their chemo appointments or kindergarteners who draw pictures of their daddy-less families and nonchalantly tell their teachers that their daddy's in heaven...well, I'll take my custom-made situation just as it is, thank you. Because it's beautiful and I am grateful." - Kelle Hampton

http://www.kellehampton.com/