...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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Tuesday, May 18, 2010

Oy!

Do I have to speak Yiddish to use this expression? Am I even spelling it right? Or is it actually Oy vay? I might be mixing up cultures here. But I don't know.

We're home. Am I paranoid? You bet! Will I get any more sleep than I got in the hospital? Doubtful. I'll detail our adventure when I can make sense. For now, let me just say, I am a slave to technology. I love that Will was monitored in the hospital and I hate it that he isn't now. So despite the headache that was going on day 6 before our stay at the hopspittle, and still persists, I do believe I'll be sitting up all night watching Will.

For now here's a picture with Heather, one of the Autism Response Team service providers that work with our Olders.And here's Willie, happily getting reacquainted with Piglet, Tigger, Eeyore and Winnie!
His poor little face didn't look nearly so bad earlier, but as the day has worn into evening, the places where the nurses put the opsite on his face to hold the nasal cannula on have gotten more and more red. I'll post pictures tomorrow where you can actually see the tiny little white line of cheek that was spared by the protection of the tubing. But I am not complaining. He's home. He's not in the hospital struggling for life. He's not intubated on a ventilator. He's well. It's his Mommy who needs to get over this.

But really, it begs the question, since he's our first ever to be hospitalized, will there be more of these trips? Maybe. But for now he is home. He's playing in his crib. And my little Piglet tipped the scales today at 14 pounds, 10 ounces. No one told him he's supposed to get scrawny when he's sick! Thanks for all the prayers! I promise to post tomorrow on the great news we got after his long awaited echocardiogram!

3 comments:

To Love Endlessly said...

glad he's back home where he belongs. :-) rest easy mama, he wouldn't have been released if he wasn't well enough to go home.

Jen Currier said...

So glad to hear he's home and well!! Did they discover the reason for the aspiration? Is it something that will have to be fixed...or did they do that already? Hungry for more info!
OXOX

Kaitie Jane said...

love the picture of heather