...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


MusicPlaylistView Profile
Create a playlist at MixPod.com

Thursday, October 15, 2009

Misery

I've tried not to complain too much, but I have been MISERABLE! For about the last month, my misery has steadily worsened. I'm sure I could feel worse, but I'm miserable all the same. The Beloved sees it. And the other day I blubbered all over him about it. He said, "It's never been like this before. You weren't like this with The Littles." And it's true. My feet and legs no longer even come close to even remembering their normal size when I lay down. It feels like a bruise from my toes to my hips. My undies leave deep grooves all the way around my body from the fluid. My toes feel like they're squished into a size 5 shoe even when I'm barefoot. They feel like fat sausages and I think they will rupture if they get any bigger. I am constantly nauseated now. Not a day goes by that I don't spend at least half of the day gagging. Last week I felt something trickle down the outside of my right calf. As I realized it was fluid leaking from my skin, the left inside calf started Leaking too. My abdomen is so big that the only tolerable position is propped up semi-recumbent on one side or the other with a pillow to support my girth. And don't even get me started on the joint tingling and numbness. Between the cervical stitch and a large fibroid where Snake's head usually is, every movement takes my breath away. It's good to feel him move, and I mentally encourage him to keep it up, but it's gotten rather painful! And again with the damned hemorrhoids! I've been DILIGENT about the stool softeners and I am not constipated...it's all the danged fluid. I dread going pee because there's no support while sitting on the toity and unless I keep my legs and butt muscles flexed and tensed, the 'rhoids just push right out. How the hell do you relax enough to pee that way? The Beloved finally insisted that I explain my weird contortions every time I rise from any position. It's a little embarrassing telling the one you are intimate with that you have New Jersey hanging out of your ass. It hurts to adjust any position and when I have to stand up from any position it feels like a cheese grater scraping against my hiney. I've had fantasies about holding a pop sickle between my buttocks! Gross, huh? And I broke a fingernail! Although, gratefully, not while I was tending to my rear end! Suffice to say, I am ready for him to be born. Every day that he stays in there is good. But I can't wait for mid-November to get here. And while I was pouring all of my physical complaints out to him in a blubbering mess, I actually said words that make me feel like crap on a cracker. I sobbed into his chest, "And after all of this, after all this pain and misery and suffering, we won't even have a happy ending!" And I wailed louder and harder so he held me and rocked me.

I don't know how people who are chronically ill cope. I have relief in site and they do not. And yet, I've seen people who remain pleasant and chipper in the face of it all. I think they must be saints.

No comments: