...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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Monday, November 1, 2010

Halloween!

I'm not entirely sure why I thought we needed so many pumpkins...but here they are, ready to gut and carve!


This is one of the Middle Little's creations.

Here you see one of The Girlie's pumpkins on the left, The Middle Little's on the right, and one of Jack's pumpkins smiling from the pillar.

Jack in his Skelly-Bones costume...with his eyes, of course, closed!

The Middle Little in his alien costume!

Yes, that's a girl in there. My Girl. In a horror flick costume. Who is this kid???
These are the only two pictures I have of The Older Littles, but in my defense, the instant we got home, they took off to raid their loot! Once they'd consumed 12 pounds of candy each, they weren't going to hold still for pictures...but the sugar crash, when it came, had them sleeping really well!

Since The Olders were hiding in their rooms, "secretly" gobbling up candy, The Beloved and I took pictures of Jack!
Here he is getting a helping hand from Daddy so he doesn't topple into the flower bed!

This is The Middle Little's other pumpkin - same theme!
"What happened to your guts???"

"Don't be grumpy pumpkin...

"...I'll share my candy with you!"

"Dude! Cheer up!" You can see my attempt to copy Jack's "Pop-eye" face onto the small pumpkin over his left shoulder.
"I brought my little pumpkin over to cheer you up!"

"Hey! Little pumpkin...go sit next to this grump...
...and spread your smile to his face!"

Blue raspberry Dum-Dums!

"Hey Mom! Candy is gooooood!"

"Thanks Daddy! I kept hitting my nose instead of my mouth!"

Here's Jack's candy poured out all over him! Notice that the costume feet are just hanging, because Jack's actual feet are a good 6" inside the legs!

All Jack was really interested in was this crinkly Teddy Grahams package!

CANDY!!!!

Jack and his pumpkin smiling at each other!

Despite the pumpkin being nearly full to the top, Jack kept picking it up and rolling over with it! His arms have gotten much stronger lately. Later this evening The Girlie squeaked "Look at him! Look at him! Look what he's doing!" And look we did! Once his jammies were on Jack was on his tummy playing. And then he lifted up on his forearms, lifted that belly off the floor and started rocking! He wasn't quite up on his knees, but he was rocking none-the-less!

Look at all that loot!

I love the naked little toes sticking out!

And here is a pic of the back of the costume!

We'd started our trick-or-treating with Jack in my arms to drink his bottle, but he was too, too interested in the goings on to eat. So, into his stroller he went. I sat his pumpkin in there next to him and he went door-to-door pounding on his pumpkin, with very little interest in the candy being tossed into it. He smiled at every one who came out to coo at him and say how sweet he was! He pooped out about the last ten minutes, but once we were in the house he woke up, finished his bottle and was ready to check out all that loot!

It's interesting to note that with both of the Older Littles, every time I tried to enlist The Dear Daddy's help with photo propping, he'd roll his eyes and would only go along with a few feeble attempts after much badgering. With Jack, he's right there, setting up photos, adding props, encouraging Jack to go along, making suggestions, lending ideas...he's a changed man!

I read recently that approximately 75% of marriages do not survive a diagnosis of autism past the first year. And an overwhelming 80% of marriages are strengthened following the birth of a baby with Down syndrome, and those marriages remain stable for the long haul.

I'm giving us odds of 2 X 75, for two kids with ASD, to equal 150 points to the positive, because we survived it. Twice! Add 80 for Jack's Ds, for 230. I'm giving us another 100 points for the surprise pregnancy, and another 1000 because The Dear Daddy rocks fatherhood so well. So...we've got a surplus of 1,330 percentage points. And I counted on every single one of them when I had to tell The Beloved that the engine light was on in the van this morning on the way home from driving The Girlie to school because she missed her bus! Oh, how I do love a good run-on sentence!

1 comment:

Pam said...

Love all the pictures and Jack looked adorable in his costume...love the picture where he is checking out all the candy...too cute :)