...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

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Monday, November 9, 2009

The Blahs, The Blues, The Doldrums

I have the blahs. I should be energetic but I am not. Ten people have already RSVP'd to my shower. It's a week away. I should be excited. But I am not. By this time with both of The Little's showers, there were twice that number who had RSVP'd. And this was a huge surprise after all, this pregnancy. Why weren't more people RSVP'd yet? Why weren't more people calling to say they would be there to celebrate our Newests arrival? Was it that people thought we were out of our minds for having another baby? Hello-ooo...I was supposed to be infertile. I have to admit that our immediate family dynamics have changed quite a bit with friends and families moving out of state and in some cases, partings of the way. Up until I'd sent the pregnancy announcements saying that Jack would have Down syndrome, I'd been in frequent communication with two of my oldest best friends. Since then however, I'd only received the occasional forwarded email, and not even that from my oldest childhood friend. Was that it? Were people too uncomfortable around me now? Was it Jack's Down syndrome? Even feeling this way about my upcoming shower, I still knew that was not the source of my ills. The shower would come, we would have a good time playing silly games, and the people who could come would be celebrating with us. Those who were out of town or working that day, and those who did not think a celebration was in order, well - they wouldn't be there and would miss the fun.

I have figured out what's wrong. I am not proud of it, but I know what it is. Jack is due in less than a month. We've known all along that the docs all planned on taking him early for both our sakes. So that leaves less than 3 weeks. At my last PHC visit, the doc was supposed to schedule my cesarean, but he put me off until next week. He said either the day before Thanksgiving or a few days after.

So here it is. I'm about to see just exactly what I've been worrying about since July 8th. We're about to find out just how severely our Youngest Son will be affected by this thing that's come into our lives called Down syndrome. And I am terrified. I am not ready. For all of my research, for all of my preparation, for all of the information I have shared with The Littles and The Beloved, I have no idea what to expect. And I am scared. Will we even get to hold him right away or will it become immediately clear at birth that he has a huge heart defect and must be swiftly swept into the NICU? Will he have the dreaded intestinal atresia and require surgery within days or even hours of birth? Will his heart suddenly stop beating before he can be born, as I've read happens to many of these little extra chromosomed babies? Except for dying in utero, all of those other worries can be fixed. They can all be taken care of eventually. What weighs heavy on me right now is more base and shallow. It has nothing to do with Jack's value as a baby, or of God's love for him. I am not proud of this, but will he look funny? Will he be ugly? Will his eyes slant so much that he doesn't look right? Will I be repulsed at the sight of my own baby? I've read about mothers who felt embarrassment and even shame when nurses came into their rooms and saw their babies. Would I be that mother? Would I be embarrassed or even ashamed of my own flesh and blood? My baby?

We already know that the Swine Flu scare has the hospital instituting a strict policy of only two visitors throughout the hospital stay...the same two visitors. No more. Am I more upset that my support network will be unable to visit, or relieved that I won't have to show my baby to anyone? What is wrong with me? Who thinks this way? That really was a fleeting thought, that part about being ashamed of my baby. I don't feel this way. But I am already missing having the happy, smiling, well wishing visitors laden with kisses and hugs and snuggles for the baby...but it's because I secretly fear in my heart that even if the hospital hadn't instituted the strict visiting policy, that no one would come anyway. Because he will have Down syndrome. He will be different. And that hurts deeply. I'd much rather feel like dirt about myself for thinking that I wouldn't love my baby than to see actual evidence that others will not show him love. I have big enough shoulders to weather the hurt. He will not. He will be just a tiny little baby deserving of love. It kills me to think that he won't have it. I know we will love him. We already do. But this birth, this emergence from the womb where I have kept him safe - this will be different. I won't be able to protect him from all of the world's hurts. I'd much rather delve deep into self loathing than to admit that Jack will be born into a less than welcoming world. That hurts deep. And I am ashamed that I will not always be able to protect him.

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