My Daugher has Down Syndrome

"My Daugher has Down Syndrome".  A few months ago I could barely choke out these 5 words without being consumed with sadness.  I could not utter this phrase without my eyes swelling up with tears and my mind being weighed down by confusion and uncertainty. 

But today.  Today and everyday going forward.  I can do it. 

I find inspiration in connecting with other people who are going through this same life journey.  It is inspiring and motivating to know that WE can get through it!  I find encouragement from family, friends, co-workers, my DS mom's support group, book and blogs.  Yes, up until 6 months ago I never thought that something as little as a stranger's BLOG could provide me with strength and inner peace. 

Today my "friend" Kelle posted something that I feel the need to share.  So many times she says exactly what I feel.  It is strange and surreal how similar our life journeys are.  She has a 3 year old girl (Lainey) as well as a  6 month old baby girl (Nella - who also has DS).  Can you see the similarities?  The best part is that she is an amazing photographer and writer.  She is able to express her feelings and inner most thoughts in a way I have never seen before.  Luckily for me, most of her feelings and inner-most thoughts, in a strange and kind of scary way, mirror my own.  Her blog posts almost always bring me to tears.  No worries - 99.9% of the time these are GOOD, happy tears.  I want to share today's words with you.  I have actually had these exact thoughts in my head and been writing this post in my mind for a few weeks now.  Well...since she just did it.  Why re-create the wheel right?  here are Kelle's words (mirroring my own thoughts and feelings):

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http://www.kellehampton.com/2010/07/on-down-syndrome.html

Tuesday, July 6, 2010

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.
I am reminded that I had these same feelings with Lainey. That there were plenty of nights I woke up early like today, unable to sleep because my mind wandered over unexplained fevers or scabs that didn't heal. I've been hit by the bus in non-special needs land too, and I guess that's a comfort. And hell, maybe she grabbed toys and jerkily hammered them to her chest too. It's okay, it really is. I just had to put it out there. Peel off the painful layer, type it out and put it to rest where it belongs.
Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once. Last week my friend traveled to Texas to be with her best friend when she welcomed her baby early...just three-and-some pounds. It was scary...and although my friend doesn't have babies yet, I had to sit back and smile at her account of it all after she kissed that baby goodbye and headed back home. Because she was smitten with the love of that little boy and what his family went through and being present to witness the transformation welcoming new life does to you. Especially when it's a little bit scary. It rocks you to the core. Picks you up, smacks you down hard and then rebuilds you with all new parts. Loving littles is one of the greatest, most wonderful things that will ever happen to you. And the minute you welcome one into your life, you inherit a thicker skin...because the bus will hit you plenty of times to the point you'll think you damn near died. But you don't. You pick yourself off the ground, dust off your knees...and move on. Because beauty awaits. The beauty that fills in all the holes and rough spots.

So, I guess I didn't feel that one coming. But it's out. And yes, I do have these days.

THANK YOU KELLE FOR SHARING   :-)  I continue to be inspired by you!