...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, August 13, 2010

Friday the 13th & the JBA

Friday the 13th - oh dear! Nah...I don't ascribe to that superstition. I'm more the toss spilt salt over my shoulder kinda gal. Cuz it's fun. Especially when you toss the whole shaker. In a crowded restaurant. And then sit back and looked equally horrified as every one else when one patron leaps to his feet clutching his noggin. But it's only to be tossed over the left shoulder. Otherwise it's just wrong and nullifies the whole superstition vibe.

Laurie was here today from The Junior Blind of America. I still like her every bit as much as I did on her previous visits. It doesn't hurt that she looks and sounds very much like my friend Auntie Dee Dee. Even the Pod Pie said, "Mom? That lady with Willie today? You know. The nice lady. With the light up toys? She was wearing a blue dress with a big busy pattern. She was nice. Mom? Well...that lady? She reminds me of that other lady. You know, with Auntie Bits and all the kids?" Do you mean Auntie Dee Dee? "Yes!!! Auntie Dee Dee! She reminds me of Auntie Dee Dee! That's what I wanted to tell you, Mom!" So it's official.

Laurie did more assessment today. She said she isn't overly concerned about Will's vision in any particular area, but she'd like to continue to see him and work with him, since his vision will be crucial to all other areas of his development. Did this sound like a good plan to me? Well, yes. Yes, it does! Okay then, same time next week? Yes, yes, that would be good! So there you have it. 1 hour of vision therapy every Friday!
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1 comment:

Beth said...

This is a very good thing! So glad you've got someone you like, AND who takes initiative. Go Fake Auntie Dee Dee!

August 16, 2010 at 6:34 AM

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