...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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Sunday, September 13, 2009

Lazy and Large

I've gotten really lazy about keeping my journal, but I just can't seem to whip up enthusiasm for much these days. I'm not sad or depressed, I am just really tired all the time. At the moment there is very little that feels as good as laying down in my feather bed, bunching up my goose down comforter and snuggling into my eight goose down pillows. With the fan and the air conditioner on!

Today I am 28 weeks along. If The Baby Dear is born now he will have a good chance of survival. I spend a lot of time researching still and reading blogs of other families with a baby who has Down syndrome. It's encouraging to see their pictures and read their stories. I'm getting a better idea of what to expect when Baby Dear comes home. The Beloved and I were talking about it this evening. He expressed more of his concerns. Will he get picked on? Will it be worse or more hurtful than for the average child who gets picked on? Will he even know he's being ridiculed? Will he be able to have a job a little more meaningful than the Wal-Mart greeter or a bag boy? I have to admit that I've wondered this very thing myself. Then he voiced the concern that nearly broke my heart. "Will he ever know the love of a woman?" I have read several accounts of people with Down syndrome getting married so I pulled up a few from the net so he could read them. Of one of the couples, the young man is actually an accomplished concert pianist, but he also plays several other instruments quite well. He and his wife live independently. After The Beloved read the info on the net he sat back and said, "We'll just have to work hard to make sure he gets all the therapies you've been telling me about and help him to live as normally as possible."

I'm still seeing the doctor every week and having NSTs every Tuesday and Friday. And I've had to do another 24 hour pee test. It's cumbersome to haul those two giant bottles into the lab, but the worst part is having to remember to pee in the cup in the middle of the night, and then have to transfer it to the container instead of just jumping lumbering back into my squishy bed.

And I do mean lumbering. I have had to resort to a step stool on my side of the bed. Okay, so the bed is a full 38" off the ground, but before I got pregnant and gained 50 gallons of fluid, I could take a running jump from the doorway and still land in safety. And yes, I have actually done that running jump thing. On occasion. Now I can't climb into my own bed without the step stool and if I attempt getting in on The Beloved's side of the bed, that quite gracefully involves his hands on either side of my broad expanse of butt to hoist me up. Really makes a gal feel pretty! Especially when The Beloved takes a few steps back after I land just in case that tremor and rumbling sound is a precursor to the bed falling down. Yeah, I feel pretty!

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