...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 28, 2009

Endo & Our First NST

Yesterday I went to see the endocrinologist, and as always, I sat there from 1:15 until 4:45. Once again, I was the last appointment. He reviewed my labs, stuck my finger, reviewed my blood sugars and increased both of my insulins. And of course he ordered more labs! I've never felt like such a pincushion!

Today was a little more fun. We had our first Non-Stress Test, Jack and I. I am 25 weeks and 4 days along today. Basically I check in, go pee in a cup and then sit there and wait. Then they call me in, check my blood pressure, tell me it's too high, poke little dents into my feet, legs and thighs, weigh me, check my blood pressure again, tell me it's still too high, check my pee, check my blood pressure again and tell me it's still too high, then check my blood sugar and tell me that that is just fine. They review my meds and send me back out to wait. So I wait, and then they call me back and Jack and I get pink and blue straps wrapped around us with some gel. We sit in a comfy chair with 'our' feet up, the NST tech pokes little dents into my feet, legs and thighs, then she checks my blood pressure and clucks her tongue. Guess why? My blood pressure is too high! So I sit there for 30 minutes with my feet up listening to the rhythmic thunk-thunk-thunk of Jack's heart until he moves away and the tech repositions the straps. Fifteen minutes in she asks, "Is he always this active?" as she repositions the straps for the sixth time! The tech checks to see that Jack's heart beat is increasing when I push the button to indicate that I've felt movement and then after 30 minutes she pulls the whole strip off and goes to show the doctor. He checks it and signs it and the tech comes back to tell me I can go. Then we struggle for 20 minutes trying to lever my bloated semi reclining body out of the comfy chair. Eventually they call the fire department, walls get ripped out, heavy equipment gets called in, the channel 4 News van arrives, a flatbed truck pulls into the lot...
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