...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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Sunday, April 25, 2010

Crabby-Snax

Jack Snack has had his crabby pants on lately. We've had to change formula over these past two days and the transition isn't making his tummy happy. I've been mixing the old formula with the new, slowly increasing the new and reducing the old. I've already noticed that his rope like poopies are softer, but his tummy is still grumbly. I do believe he is spitting up more now too. Not a lot, just more. Right now he's having a snooze on the couch on his tummy...right where I can see him. Which for me begs the question, How did our mothers sleep while we were on our tummies? If I can't see his back rise and fall, I have to go listen for his breath and touch him to make sure he's warm and well. Any trip to the bathroom is a well thought out mad dash! It's making me nuts that he's on his tummy asleep, but it does seem to be moving the gas along.Since my sunny little boy has been a storm cloud for much of the day, unless being held, here are a few pictures of how we've spent our day.

First we had a trip through the car wash. He didn't object, but he also was not his animated kicking and wiggling little self no matter how much I coaxed. He was happy to just chew on his hands.

He didn't do any splashing and hardly any cooing at all. He was happy to have the water splashed over and around him, but he wasn't the happy little elf I've come to expect in the bathtub. Poor baby. Next we tried a snuggle with his big sister.
I can see that he doesn't feel real spiffy. Poor Ducky. For the most part I wound up holding him for much of the day. I'm glad he's finally having a comfortable, restful sleep, but right now I just want him to wake up so I can flip him over!

2 comments:

Gabriel's mom said...

I remember those days of wanting your little one to get some sleep but afraid to leave them on their back. Lucky your little man is able to eat on his own and you haven't had to tube feed him. That is a whole different mess. He is super cute! I hope he is feeling better quickly!

Anonymous said...

tummy sleeping was a big issue for me too, after much thought, research, and personal reflection, i truely do think the whole "back to sleep" thing is over blown and possibly a conspiracy... seriously, babies have been sleeping on thier tummies for ages... and obviously sleep better that way. My baby slept on her tummy for naps on the couch every day, we swaddled her until she was three months old, then bought an angel care monitor and let her sleep on her stomach in her crib at night... ah sweet bliss... sleeping through the night.
Dont beat yourself up over it!

hugs,
dannielle