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.

Monday, August 13, 2012

lost dreams

Unfortunately, since I am part of the Down Syndrome community, I heard that Kelle Hampton is pregnant.

And while I can honestly say that I wasn't jealous of her in my previous post/posts, I say with 100% truth that I am now. . . .and that has nothing to do with her being Kelle Hampton. It has everything to do with her having something that I so desperately want. . . a normal life.

You see I didn't have it all, but I had something. I had my fiance. . . and now I don't. Now I don't even have the dream of possibility. I'm 29, I have one child with Down Syndrome. . . I'm a single mom of a child with Down Syndrome. Finding someone to create a new dream with is almost impossible. I don't even know where to start.

I'm angry that her happy pregnancy has rained on my parade. Fuck that, this is no parade, you just added rain to a lightning storm and it fucking sucks. It sucks balls. Big ones. Big hairy ones. Big, hairy . . . well you get the picture.

I always told people that I was fine with just Seth, just one child. . . the truth is I'm not. I long for a normal pregnancy, a typical child.

I wanted to feel a child kick within me and not worry about how many chromosomes he had, whether he would have a hard life or not. I wanted to enjoy the magic of pregnancy. . . the joy that can't be destroyed, not with a thousand swords.  (That was totally from The Princess Bride)

I haven't ever had one normal or easy thing in my life. NEVER. And I wonder if I'm even worthy and if that is maybe why I don't have these things. I just want something that isn't tainted by life. Something that isn't scarred or marred or second hand or fucked up in some capacity. . . it's like buying a new dress and coming home and seeing that the zipper is broken. All the zippers in my life have come broken, shit some dresses didn't even come with zippers. And as much as I can tailor my life . . . sometimes you just want a new dress that you don't have to fix.

I long for normalcy in so many facets of my life. I was supposed to raise my child with two parents, two parents who loved each other. I failed him miserably. Not only does he have Down Syndrome, now he comes from a single parent household. I didn't want that for him.

I can't help but feel that I'm failing here. That I've missed something. Normalcy used to not be important to me but now it is. I don't know why I crave it so much but I just really want it. I really want to know what it's like.

I had the opportunity to create the perfect family that I never had. And now I will never have it. Ever. And the loss of that is a very real loss. The pain is very real.

I can't wait for this next year of my life to pass very quickly.