...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, October 11, 2009

Decorating the Nursery, 32 Weeks, and a Blank Little Boy

Today The Littles and I decorated the nursery. We hung the Cow Jumping Over the Moon and some sweet stars that were hand painted by the Incredible Miss S for The Middle's nursery. He was happy to donate it to Jack's nursery. I'd also saved some small shelves and knick knack cubes from The Middle's nursery.

Decorating Jack's nursery took me back to when I'd decorated nurseries in our first home. First for My Girlie, and then the new Big Girl Room across the hall for her while I redecorated the nursery for The Middle. I never in a million years thought I'd be decorating another nursery.

This is a picture of my Mother's rocking chair. It was in each of The Little's nurseries, and it is draped with a blanket I'd cross stitched years before we were expecting The Girlie. That blanket has also been in each of their nurseries.

The beautiful loaner crib from Auntie Bits!

While we measured and marked and hammered I described for The Littles how much fun it had been decorating each of their nurseries.

Note the teddy bears The Girlie has placed in the bouncer and the car seat!

When we were finished they each brought some of the treasures from their babyhood to share with Jack. Beloved books, dog eared bunnies and bears, and even a few baby toys I had no idea they'd pilfered from the donation pile. It was a fun time and when we were finished, the shelves and cubes were filled with treasures from The Littles to their New Little Brother.

This particular view is of Jack's mirrored closet doors and in it's reflection is the changing table and a picture of "Fireworks Tonight" that I won at the NRA banquet when The Middle was just tiny.

I am 32 weeks along today. So I started actually packing the diaper bag and putting things I'd need into a small suitcase loaned to us by Grandma Emmie. The invitations for our baby shower will go out tomorrow. The Incredible Miss S will be out of town and Grandma Emmie will have to work that day, so that has me sad.

At my NST this past Friday I saw a little boy with his mother, also pregnant and waiting to be seen. The little boy was in his stroller looking very dull and uninterested in any thing. He looked to be about two years old. He had no toys. He didn't look around. He showed no interest in the television on a cartoon channel. He didn't wiggle or squirm to get out in all the time I'd sat there watching him. Occasionally he looked at his mother. Once he made a loud grunting cry and the mother produced a small bag of cheerios. He cried louder and the mother produced a bottle, and popped it into his mouth. So she sat there holding a bottle in his mouth while he sat in his stroller. He stared off at nothing in the empty air and sucked his bottle, never once attempting to hold it for himself. I'd seen him move when he cried, putting his fists to his eyes, and kicking his feet, so clearly he could move. But he had no interest in holding his bottle. His face was dirty, as were his hands. And his facial features were quite clearly those of a child with Down syndrome. Except for the time he cried for his bottle, his mother gave him no notice. None. Even a mother who's holding a sleeping child will look down at her little one now and then, maybe stroke a brow or swipe away a wayward lock of hair. Not this mother.

I've spent hours thinking about this. I'd first noticed the little boy when his mother was in line in front of me waiting to check in, then saw them again minutes later in the waiting room. Same dull blank look. I recalled that every medical site I'd gone to said that all children with Down syndrome have mental retardation. Every site said it ranged from severe to mild/moderate. Very few sites even suggested that it could be, upon very rare occasions, if you closed one eye and squinted with the other one, when the moon is 3/4s full, minimal. Nope. No hope there. After worrying about this for hours I finally decided that this little boy was dull because he'd had no stimulation. I'd already looked into the Regional Center for Our Baby. Maybe that mother had not. Maybe that mother expected nothing from him. Maybe that mother had not been offered services for him. Or maybe he was severely retarded. Or maybe she was too deflated to engage him. Or maybe there was something else besides Down syndrome. Maybe, maybe, maybe. I'd never know. I did know that no matter how mentally retarded Our Baby may be, I would still cuddle him, still look at him while he sits in his stroller, still touch his cheek, still wash his face, and still give him some baby toys in case he wanted to at least look at them. I don't know the circumstances of that little boys life, but I know that I can't shake this deep sadness for his blank stare life.

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