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Tuesday, January 17, 2012

Coming Full Circle

If you've been reading my blog for a while you've probably read my "Guilt" post - on how I felt right after Kayla was born and realized she had Down syndrome.

It was her eyes. As soon as I looked at her face I couldn't help but zero in on her eyes. It was because of her eyes that I knew in my heart she had Down syndrome. I couldn't focus on anything else, I couldn't even be elated that I just gave birth to my first child and she was in my arms, fresh from my womb.

I asked the midwife, "She does have Down syndrome, doesn't she?" But she wouldn't specifically answer. She did a brief look at the palm of one of Kayla's hands and shook her head. She drew an imaginary line from her eyes to her ears and said they weren't low set. All I kept saying was, "But her eyes. What about her eyes? Doesn't she look like she has Down syndrome because of her eyes?"

In that moment those eyes spoke volumes to me. Things I didn't want to hear. I was now the mother of a child with Down syndrome. My daughter had Down syndrome and this was my reality now. This was our life. This wasn't the life I imagined. This wasn't the birth I imagined. This wasn't the daughter I imagined... and it was all because of her eyes.

It was almost 2 weeks before we got the blood test results back confirming what I already knew. During that time I found myself staring at her eyes. I wondered if other people could tell just by looking at her. Sometimes I would look at her a certain way, or she would look a certain way and I would think, "hmm...maybe she doesn't have Down syndrome after all." But no, it was just a little false hope and wishful thinking. Most of the time I would look at her eyes and all I saw was "Down syndrome" like a neon light flashing off and on. It was as if her eyes were saying, "Yes I have Down syndrome, now LOOK at ME."

Of course I had no idea what was in store with those eyes.

I had no idea that yes, her eyes would become the focal point of her features. I had no idea people would comment on her eyes when they would meet Kayla. And they did, and still do. I started hearing, over and over, from strangers how beautiful her eyes are.

At first I was skeptical, thinking people were just saying that to be nice and kind ... as a consolation to the fact that they knew she had Down syndrome.

But then I finally got past the point where I didn't look at her face - at her eyes - and see the neon flashing "Down syndrome" sign anymore. I saw her eyes for what they were ... simply eyes. Eyes with a beautiful slight almond-shape tilt to them. Eyes with a pretty shade of blue. Eyes with Brushfield spots that sparkle.

So when I found out about the Most Beautiful Eyes contest, I wanted to enter Kayla's picture. It was a legitimate contest with independent judges. And of course the incentive of winning a college scholarship was one of the main reasons.

After Kayla was the state winner for SC (thanks to online voting from family and friends sharing the link) she was then selected as one of the 5 winners who were sent to the judges. Up until that point I'm not sure if anyone knew she had Down syndrome or not. Not that it mattered, that had nothing to do with the contest. When I look at the picture I submitted I don't think it's really obvious, but then again, I don't 'see' it in her all the time now either.

When we had our first newspaper interview I debated whether to mention that fact or not. In the end I decided to mention it because even though the fact that she has Down syndrome had nothing to do with the contest it is the fact that she has Down syndrome that her eyes have the beauty they have. It's because she has Down syndrome that she has the almond-shape and the Brushfield spots. I couldn't leave out that fact. I wanted people to know, yes this kid is a finalist (and as you all know - the ultimate winner!) in a most beautiful eyes contest, and guess what? She just happens to have Down syndrome.

Yet 8.5 yrs ago in the delivery room I didn't see the beauty my daughter already had in her. I never imagined that one day those eyes ... those eyes that I felt such grief over ... would sparkle and shine. I didn't know those eyes would come to speak volumes to me again; joy, wonder, amazement, innocence, curiosity, defiance, strong-willed, joy, happy, love. I had know idea those beautiful eyes would one day win her a college scholarship. 

There is beauty in Down syndrome. Truly there is. Not just superficial beauty such as Kayla's beautiful eyes (although I have seen a great many children with Down syndrome who have those same beautiful eyes!) but beauty in her spirit as well. Beauty in the joy she finds with the little things, beauty in her curious nature and innocent ways.

And I think it is about time that society starts to see the beauty in Down syndrome, too ... because it is there.

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13 comments:

Mom24 said...

I think this is why prenatal testing scares me so much, you only have the words, not the beauty and specialness to balance it. Thanks for sharing this Michelle.

Anonymous said...

LOVE this post! It brings back so many similar thoughts. The hardest mourning for me came from losing the expectation that I'd have a "pretty" daughter. I cried over the girly dresses hanging in her closet, because I thought she'd never be "that girl".

Four and a half years later, and I am completely thunderstruck at how gorgeous she is. She is so pretty. I didn't expect her to be so pretty.

What's even better about her being so pretty is that through her, I've realized that it doesn't even matter. So now, it's sort of like "cuteness" icing on top of the "all the rest of her" cake...if that makes any sense.

Heather said...

This is such a true and beautiful tribute to one of the most beautiful little girls in the world. I love that you are willing to share your guilt and your love because I think so many can relate to the guilt but are afraid to admit it and you are showing that it's ok and it doesn't take away from the love you have for your child.
PS. She really does have the most amazing eyes!

Anonymous said...

made my eyes all teary eyed. i have to keep sniffling. Your deep thoughts in your mind and heart that you alone can cherish, feel quilty about, share with, and then see the beauty in your Kayla with almond shape eyes and brushfield spots that sparkle. love mom

Jaida said...

So beautifully stated. I couldn't agree more. As much as I want Pacey to be seen as a HUMAN BEING like the rest of us, I can't help but also acknowledge that there is just something extra special and beautiful in him. We call it Pacey Magic in our family :)

I'm so thrilled that Kayla won that contest. It's so fitting that it's a college scholarship. Shoot for the stars!!

lovemy3 said...

Beautifully written! I carry that guilt too. I'm not sure I will ever let it go or forget it. I hope through our blogs...our words...that we can open everyone's eyes to the beauty of our children!

ckbrylliant said...

Beautiful. Thank you for sharing your deepest feelings. It was that eyes that first whispered DS to me too as they held her next to me as I got stitched back up and ultimatelty the extreme excess nuchal fold ( like 5 extra inches) that clarified it for me. It is interesting the difference in people's experiences based on birth order and other factors. I think my experience would have been exponentially different if she had been my first child (she is my third). Kayla IS so beautiful with or without Down Syndrome, however, I do love logging into your blog and seeing those blueberry eyes.

Debi DPT said...

As always, I get warm on the inside as I read your blog. I remember the 'early days'... your fear for her future, but the love you already had for her. Kayla... beautiful, baby Kayla... I remember looking down into her beautiful little face and knowing how special she would be... yes, because of the Down Syndrome. I remember sharing my love of people with DS with you and thankful that you invited me to be a part of her (and your) special journey. You all are always in my heart. I still smile and get that warm feeling inside when I look into Kayla's blueberry eyes.

Mommy to those Special Ks said...

Great post! I carry the same guilt from when Kennedy was born. I'm so thankful that Kennedy is Kennedy... I wouldn't change one chromosome or one hair on her pretty little head. We're so lucky to have our girls! :)

Tamara said...

Nicely said. I was on the NADS board this morning and read a post from a new mom. I've given her the link to this post. From her post, I think it's perfect for her. Great timing.

Eve! ò-ò said...

Hi,
I'm Alessandro from Italy, i'm 15 years old and i'm the brother of Eleonora, she is 7 years old and like u she has down syndrome. Eleonora looks very like u but she hasn't your blue eyes.
This is a photo of Eleonora :D
http://imageshack.us/photo/my-images/861/1006412.jpg/
Ciao!

Joyfulness said...

And a beautiful post too!

Bethany said...

Love this! Oh, the irony. For Payton, it was all in the eyes too. I just blogged about that actually ... her eyes were what did it for me the day she was born too.