...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




Lilypie Second Birthday tickers
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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Friday, October 22, 2010

Hair Pulling, Pinching and Biting

I used to simply adore the way Jack greeted me first thing in the morning. Two hands full of hair and his lips dive bombing my face. It was an even more exuberant greeting when I got home from work in the morning, after he'd been awake for at least an hour. And then Monday morning, when I scooped him out of Miss S's arms, he grabbed a hand full of hair in one hand, a hand full of neck skin in the other hand, and sunk that sharp little fang into my jaw. It was a nasty little surprise and quite the eye opener. Jack was so happy to see me that my surprised shriek did nothing to deter him...I just made sure he had nothing to sink that fang into!

So fast forward to Tuesday when we were getting settled for a nap. After repeatedly removing his grubby little fingers from the fine hairs at my temple, I started stroking his face and saying "Nice. Nice. Soft. Gentle." Then I used his little grabbers to stroke my face, all the while repeating the mantra. And I stroked his face and hair with his hand. After removing his hands from my fine hairs about twenty more times, he pulled a fast one on me. Really fast. He looked droopy eyed so I rested my head next to his and closed my eyes for sleep. And he grabbed some hair and some neck skin and reeled me in to bury his sharp little fang in the tip of my nose. I don't know what hurt worse, the hair pulling, the neck pinching or the nose biting. It brought tears to my eyes and a giggle to Jack's lips. I gave him a firm "NO!" while I extracted my hair and flesh from his paws. And he did it again. This time he didn't laugh. The expression on his face was truly one of taking it in. Seeing what happens. Another firm "NO!" and gentle stroking. And he went to sleep.
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