...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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Saturday, December 18, 2010

Christmas Carols

In honor of it being Christmas, I'd like to share a few of my new favorite Christmas Carols with you!


We Won't Go!
sung to the tune 'Let It Snow'

Oh, your party sure sounds delightful,
But our child's behavior's frightful,
And since we'll just bring you woe,
We won't go, we won't go, we won't go.


Well, the tantrums he won't be stopping,
And we'll chase him 'til we're dropping,
He just can't stand the stress, and so
We won't go, we won't go, we won't go.


If we actually made it there,
After miles of yelling and gripes,
We would suffer your guests' cruel stares
And overhear all of their snipes.


Oh, they'd whisper that we're bad parents,
And our child is quite aberrant,
'Til our spirits were sunk, and so
We won't go, we won't go, we won't go.



Hark, The Relatives Complain
sung to the tune 'Hark, The Herald Angels Sing'

Hark, the relatives complain,
"Your child is a royal pain.
You're too easy, you're not strict,
All he needs is a swift kick."


They don't listen, they don't see,
Doctors, therapists agree,
They don't care, they know it all,
Onto me, the blame must fall.


Hark, the relatives declare:
"Diagnosis? We don't care.
Kid's just lazy, bored, and rude,
All these problems come from you.”


They don't listen, they don't know
How their judgments hurt me so.
'Til my wisdom they extol,
I'm gifting them a lump of coal.



You Better Watch Out!
sung to the tune 'Santa Claus Is Coming To Town'

You better watch out,
You better not get
Toys that my child's not ready for yet.
Ask me for ideas this year.


I'm making a list,
I'm checking it twice,
And if you don't ask, you're naughty not nice,
Please take my suggestions this year.


Those age-appropriate playthings
May fit those "average" tots,
But my special little angel
Needs a lot of extra thought.


You can't catch him up
With a puzzle or kit.
Why not get a gift
That really will fit?
We threw out what you bought last year.

All of these song adaptations are from Terri Mauro of http://specialchildren.about.com/ I've been reading at her site and I like it!

Merry Christmas!
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