...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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Sunday, August 16, 2009

Signs

I started doing some simple sign language with The Girlie when she was little...and then it fell by the wayside. I tried to start again when The Boy-O was little, again it fell by the wayside. I've been reading like a fiend anything I can find about how to help The Newest, and signing figures prominently in every article about communication and Ds. I do not believe that children speak less or slower when they are started with signing early. I think it helps them communicate and when they discover that there are spoken words to communicate the same need, their speech often explodes!

So, The Littles and I have spent the day practicing simple signs. The Girlie is picking them up very quickly. Boy-O is only tolerating my instruction because I have insisted! And I do believe The Girlie has a greater memory capacity than I do...I still have to look at a cheat sheet but she calls out the name of the sign before I've finished doing it!

I plan to keep this up this time. The Newest is being born to a grand matron for crying out loud - I have to ingrain those few remaining memory cells before they die off completely, and better that The Baby is the only one learning at that point rather than everyone around him who is supposed to know what he needs! Yes, I'd better get started now...

While I run The Kidlets through five minutes of signing several times each day, I sometimes feel myself step back and ask myself how we got to this place. What are we doing here? My heart is heavy. But hopeful. And it's something I can do for The Newest, rather than just sit back and cry. I would not in a million years have desired to have a genetically 'enhanced' baby. But since The Newest will have extra chromosomes, I am going to do whatever is in my power to make sure he's the best extra-chromosomed person he can be. If spending a little time each day learning signs helps stave off the insanity I feel like I'm precariously dancing around, so much the better. It's at night when I'm laying in bed that I get really fearful.
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