Monday, August 20, 2012

a glimpse into the past. . .

I have been having Seth's medical records sent over to his new ENT doctor because he is having ear tubes done . . . again. Hooray for annoying procedures that take 15 minutes yet require 5 million years of medical history and paperwork. Fuck the Earth, I think Seth's killed most of a forest trees with his medical paperwork. Sorry forest.

And so I found it. . . Seth's amnio record. I never held it in my hands before. . . NEVER. I knew what it said, knew what it meant, I just had never seen it on paper. . . and not only did I never see it on paper, I never remembered my amnio or diagnosis date. So now I know. . .

On August 15th 2007 I had the test that forever changed my life. I had the amniocentesis that told me that my child had Down Syndrome. I wasn't scared that day, I was excited because I just knew my kid didn't have DS. I lied to myself. . . I knew. . . looking back I did know. And I've never really discussed this with anyone. I can't explain it but I had a feeling that Seth was different. He didn't move around in there a lot, I didn't get sick like people said I would, it was a very different pregnancy.

When that first blood test came back telling me that my results told me I had a 1:100 chance of having a child with Down Syndrome I didn't know what to say or do. It was over the phone. . . and it was not scary, it was confusing. See when you don't know what to expect you just cry. I cried, hysterically. What else was I supposed to do? I was 24 and had no idea about having a kid and then I was told that my kid might not be normal. I called my mom and she told me not to worry, that the test was wrong a lot. LOL. I'm laughing looking back on that memory.

There I was, sitting at the kitchen table, writing down all of these numbers, all of these ratios, and suddenly I had all of these choices. Amnio or CVS? or wait for more bloodwork? Termination or continuing to term? More personally, "would I still love him?", "is he still mine?"

The amnio itself was one of the best experiences I had during my pregnancy. I got to see my baby. I got to see him so big and so grown inside there. And as I looked at that screen I knew I had already made my decision, he was mine and I wasn't letting him go anywhere. And you see the big amnio needle on the screen, literally so close to your baby and you think "omg" and you feel this chest pain that is unlike anything I've ever felt before that moment, and at that time you know that you could never, ever bear to see your child hurt. And Seth, somehow knowing my fear, pulled his hand back away from that needle and I thought "wow, he already can understand me, feel my fear for him". It was an amazing moment, I'll never, ever forget it.  

Seth was my baby from that moment on, from that moment that the ultrasound technician put a little XY on the screen and my mind screamed "OMG I'm going to have a little boy", a little boy that will love Star Wars and Jordans and will have straight brown hair and brown eyes. (yes to the hair, no to the eyes).

My imagination brought me places I never thought were possible and I knew that I loved him more than anything else in the whole world. That I was no longer important in the scheme of things. That termination wasn't ever an option. . . no matter what.

I want to say the date of Seth's diagnosis, or when I heard it was August 22nd 2007. It's somewhere from the 20-23rd. It was the phone call that changed me forever.

And I wish I could say it's been an easy, beautiful journey. It's been a journey, it's been beautiful and horrifically ugly at the same time. It has forever changed me. My heart isn't the same. My heart feels like it's swelled four times its size in my chest. And it's all filled with Seth, with love and understanding and patience that was never there before.

And I can't imagine a time before that, a time before Seth, a time when I dismissed the beauty and joy that is life with him.

I will never be the same again, but I don't want to be.

Unity by Shinedown

I’ve seen a million miles
Met a million faces
Took all I knew
To reach all these places
And I’d do it again
If it brings me back to you

So have you ever been caught in a sea of despair?
And your moment of truth
Is the day that you say “I’m not scared”

Put your hands in the air
If you hear me out there
I’ve been looking for you day and night
Shine a light in the dark
Let me see where you are
‘Cause I’m not gonna leave you behind

If I told you that you’re not alone
And I show you this is where you belong
Put your hands in the air
One more time

I'm not scared. And I'd do it all again to have Seth. And he belongs here, on this Earth, with me.


  1. I didn't have pre natal testing so i didn't know my girl had DS until she was born. But I too had a feeling during the pregnancy that something was different. Friends who were pregnant were saying how acrobatic their babies were and mine hardly moved. I also didn't know the sex and one night I had dream that my baby was a girl, but her face looked different to mine and hubby's. You. would think I might have twigged on to something then but no ! Lol
    You know the biggest fear of mine when she was born was that she would be socially ostracized. I didn't grieve because of the child 'I didn't have' but I grieved because I feared she would not be valued by society. So that fear has formed my framework for raising her. I put her out there in society and we have lofty goals for her, and you know what, it is all happening. I think with this attitude I have managed to attract positive people into her life, people who see her strengths and value, and don't place 'poor little girl with ds' attitudes on her.
    A little story .. My daughter was 4 and we rocked into the doctors waiting room. She ran and got a magazine and sat on a chair, and I sat next to her. A rather young woman gave that sympathetic pitying look at my daughter, I gave her a big smile. And you know what she said, ' oh, it must be hard for you'
    Can you believe that?? So I laughed and nudged my daughter in the arm and said, 'did you hear that, you are hard for me' and laughed. My daughter looked at me, said something like mmmpphhh and went back to reading her magazine. So those are the things and attitudes we are out to change. They don't happen now actually cause I think we put out such a vibe that life is good, no disability here, just different ability.
    Good luck with the ears. We used an osteopath for several years and she never needed grommets.
    Sorry for the rave but I am home sick! Gives me time to rave lol.

  2. You know what? I knew, too. I knew that my baby was going to be different. Even before the amnio confirmed it, and when I started going for bloodwork and tests and all the poking and prodding...I KNEW she was going to have Down Syndrome – or something. And I was right. Isn't that funny how sometimes you just...know.