...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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Thursday, July 29, 2010

Junior Blind of America, Take II

Shortly after Anna from Early Intervention left at 3:50 pm, a very nice lady named Laurie arrived from The Junior Blind of America. I really liked her and she wasn't scary at all. Even though I previously posted that I was wiggy because Jack was getting services for the blind. She was quite nice, personable and friendly with Jack.

I usually time Jack's bottles to either be due an hour before his standing date with Anna, or right after. If he eats too soon before Anna arrives he gets sleepy. If he's due to eat when she arrives, he gets cranky. Today was perfect. I had just popped his bottle in his mouth when Laurie arrived. She'd told me on the phone that she wouldn't be working with Jack much on this first visit, that she'd mostly be asking questions and taking a history from me, but she did hope she'd get to meet him. Like I said, a nice lady.

So, I fed Jack and answered questions, and he charmed Laurie. We even covered our years of fertility treatment for the Older Littles. At one point Laurie asked for clarification of his name. Is G****** his middle name? No, it's one of his last names, T*** being his proper last name. What's his middle name? Leonidas. Oh, that's unusual, did you name him for someone? I explained that his Dad and I wanted a strong name sake for the challenges that may lie ahead. William Wallace of Scotland and King Leonidas of Sparta were both very strong of character and of might and met their challenges coming rather than going. Wow, that's quite a legacy for a little boy! Well, we figured with the Down syndrome he might need a little leg up on bravery. Oh! He has Down syndrome? I hadn't been aware of that! She seemed excited by that! And she turned to my Willie Boy once again. And he gave her a big wet slobbery grin! She said she would not have guessed because he simply didn't look like he had Ds. She said she's worked with quite a few babies with Down syndrome (Points for putting the baby first!) and she just would not have guessed! Then she spoke to Billy-Joe-Jim-Bob in her sweet cooing voice and said, "Well that makes you just an even more extra special surprise blessing, doesn't it!" and she meant it! (I tell ya, this gal racked up the points with me!)

So after an hour and half, we have an appointment for next Friday to see her again. She'll bring a bunch of auditory and visual stimulation toys and try to best determine how much of a visual field or loss Jack does or does not have, and she will tailor a vision therapy program to meet his needs. I really liked her and how she regarded Jackie Boy and I am looking forward to our next appointment!

And I promise, there are pictures in the following post!

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