...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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Thursday, January 20, 2011

Spoiled or Sick?

The Beloved says that Jack is getting spoiled. I beg to differ. It's true that every one in the household pays attention to him, and it's also true that for five, soon to be six, hours each week, people come to see him and spend all of their time playing with and paying attention to him. And each of the ladies that come to see The Olders every day also pay attention to him.

If he were getting spoiled I think I'd see a lot of him getting fussy when I put him down to play. I'd see the crinkle face and hear the screams of protest when I take away something he shouldn't have, when the dog walks away from him, when a toy rolls away from him, when a favorite activity stops, when I walk away from him to leave the room, or when I put him in his cradle to sleep. I think if he were getting spoiled, I'd see quite a bit of crankiness unless things are going exactly as he wants them.

Oh. Wait. He is doing all of that stuff!

But he's also been running a low grade fever, the highest being 99.1, and everything that comes near goes right into his mouth. Especially soft things like spitty cloths, fabric toys, his clothing, everyone else's clothing, pillows from the couch, The Middle's discarded socks, chewy things like bottle nipples and pacifiers, any finger he can grab and shove into his mouth before the finger's owner realizes there's a tooth about to pierce their flesh, Princess's tail, purse straps, power cords, shoes, the edge of the carpet, doggy toys, and pretty much any thing else classified as off limits. Nothing is safe from his mouth.

So tonight I stripped him down and popped a frozen strawberry into the new mesh feeder I bought for him and put him in his high chair. I put the feeder into his mouth and he immediately made a monster face and gave a whole body shudder. He didn't like the cold. He banged the mesh bag and the strawberry around on the tray and in general had a ball leaving little pink smears every where as the strawberry softened. I was folding laundry and every few minutes I'd try to entice him into putting the bag back into his mouth. He stopped shuddering but was no happier to chew on it. Once the strawberry was no longer frozen but still cold, he gobbled it all up and started sucking on the bag to get more juice. And he was much happier! Of course, the wet wash cloth I wiped him up with...right into his mouth! He's busily chewing on it as if it were a juicy premium cut of beef and he a starving baby who hasn't eaten in days.

So The Dear Daddy had better stop telling lies about My Baby, or his juicy premium cuts of beef are going to be replaced with a wet wash cloth!

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