Tuesday, September 30, 2008

My Idea of Perfection...


Get It Down; 31 for 21Over the course of the last nearly 19 months, we have been asked the same question time and again. At first, I never gave much thought to what appeared to be an innocent, seemingly well intentioned, inquiry. As time passed however, I began to wonder. Was there an unspoken caveat or at the very least, curiosity, attached to it? The question.......Did you know? Did I know..... what? The rest of the sentence often hanging out there in awkward silence until followed by..... did you know before she was born that she would have Down syndrome? Our response was always the same. Yes we did. No, we did not have an amniocentesis. We knew because her type of heart defect is primarily, if not always, found in babies who have Down syndrome. That was usually that. Enough asked. Enough answered. But since Zoey has been born I know for certain now, because a very few have been straight forward enough to ask, I know for certain, what some are really wanting to ask. Why they are even asking in the first place. Not my paranoia. Not my speculation. Ask other parents of children who have Down syndrome and they too will tell you. What they are initially asking, what they are wondering is, had you been one of the ones "taken by surprise," had you had a choice would you haven chosen differently? Were you one of the ones who made the conscious choice to bring this child into the world knowing they were coming into it having Down syndrome or did circumstance decide for you? Did life decide, instead, for you? Why does it matter you ask? Why bring up and spend so much time on, what from the outside appears to be a harmless question? One might only have to look around your very own corner of the world to find the answer. If you spend a little time glancing at the faces of children scurrying past you, you might be able to answer for yourselves. The cold, hard and very sad fact of the matter is ..... there are not as many children, as many people, with Down syndrome as there use to be. Again, not paranoia, not speculation ...... fact. Today the statistic stands at a staggering, heartbreaking number of ..... 85 - 90% of families who receive a prenatal diagnosis of Down syndrome abort. Let me have you sit with that number for a moment, then let me repeat it. 85 - 90%. Some believe it to be even higher. I don't have the right words to follow that statistic. I do know however that with the ACOG new recommendations that all women, not just those over the age of 35, be provided with prenatal screening, that that statistic will rise. Do we, in the face of those statistics, have an obligation, a responsibility, not just as families with Down syndrome children, but as human beings? How do I, as a mother of the most incredible child, resist the urge to shout and scream for all to hear that this "thing" that people think happened to us is really okay. More than okay. That this is not the end of life as you know it. It's quite possibly just the beginning. How do I translate to others the beauty and light our lives have taken on because Zoey is here with us? As I lay on the perientologists exam table, at 21 weeks in my pregnancy, I was asked, fairly casually, what I wanted to do? I was reminded that things were "time sensitive" where my decision was concerned. I literally fought the over powering desire to not just bolt out of the room but to also throw up right then and there when I finally realized what they were asking me. I glanced at the ultrasound screen ,where I watched in awe my tiny baby girl kicking and squirming and there was never a question. Ever. Nor would there be today. Did the diagnosis of Down syndrome have more in store for us then we bargained for? Than Zoey bargained for? Absolutely. But with that said, the diagnosis of Down syndrome has also held more joy, more love, more strength, more faith, more perspective, more tolerance, more patience and more grace then we could ever possibly convey to you. I recently had a mom, who's little one also has Down syndrome, tell me I wouldn't exactly be the perfect welcome wagon for a family just settling into the diagnosis of Down syndrome. I wasn't offended. I knew what she meant. I, or rather Zoey's battles, would probably scare the heck out of most, but I hope one day my time will come. That Zoey's time will come. That one day we both will be able to stand, side by side, before a family and be a picture of hope. To dispel the distorted image that comes to mind when one hears Down syndrome. That Zoey will represent a vision of the future during another mother's hour of despair. That Zoey will represent strength, determination, courage, innocence, goodness and most importantly, perfection. Not society's idea of what perfection should look like...but instead the image in which God had always intended it to look.

8 comments:

penny said...

I assume from your comments that Zoe has an AVSD which is what indicated that she probably had Down's Syndrome?

It's such a pity isn't it that it didn't also indicate what an absolute cutey she would be!

Congratulations on bringing such a beautiful little girl into the world, I;m sure many peopel will beenfit from knowing and lovign her.

Penny Green
Down's Heart Group
www.dhg.org.uk

penny said...

Oops, please excuse typos in my previous comment - full of cold and can't see the screen or keyboard properly. Or maybe I was just dazzled by your little one.

Reagan Leigh said...

Beautiful post as always Heather. Those statistics are staggering. And sickening. I too have heard that same question. Did you know ahead of time? But we did NOT know of the problems Reagan would have beforehand. Had no idea for months actually. But once I made the decision to get pregnant ...terminating the pregnancy, for any reason, was NEVER an option. I didn't even get the suggested prenatal testing, because I figured WHY??? I wouldn't change anything regardless! (And those tests wouldn't have even hit on Reagan's issues anyway.)

Kele said...

Oh H, I am soooo going to LOVE this month to post, educate, share AND read all the INCREDIBLE stories of others. YOU are soooo right on with this post. I love it!! When I look at Zoey, Pres and so many others Ds children, I think...'if people only knew what WE know'. That in itself is one of the reasons I am so excited about this month and the opportunity it provides...we get to try our best to HELP them KNOW!

Carey said...

Truly they are perfect! I can't think of anything as perfect as our kiddos. Aren't we lucky?!

Cheri said...

Heather, I think Zoey already represents, "strength, determination, courage, innocence, goodness and most importantly, perfection. Not society's idea of what perfection should look like...but instead the image in which God had always intended it to look" That is not just in the future...it is already evident, she is already those things and I see it in her cute little face every time I pop on over to your blog!!

Through Reid's diagnosis of Down syndrome he has taught me to see beauty where I didn't recognize it before, a gift that so many families will not receive because of their decision to terminate...makes my stomach turn. I could say more but then I'd be ranting!

I love your idea of 31 posts for Ds awareness month. I am going to set a goal for myself to do 21...because I know 31 is way out of my league right now with everything going on...

As always, looking forward to your posts this month.

Princess Abigail said...

Wow.

Different chromosomes, similar situation.

I am glad I stumbled across you, your family, and your spunk, tonight!

Thank you

Alison
+ the Bernard Bunch

Anna said...

The percentages you quoted just break my heart. Their loss.