...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, July 19, 2010

Junior Blind of America

The Junior Blind of America, JBA, is the former Foundation for the Junior Blind. I have been on the phone for the greater part of the day, chasing down referrals for Jack, getting the run around, being referred here and there, transferred, disconnected, misinformed and jerked around since about ten am. I am off the phone now because every one is now, of course, closed. It's after 5 pm here.

And I babble because I'm still a little scared skinny that Jack is to start getting services from the JBA. The JBA! The call to Barbara, of the JBA, was the only call I made today where I wasn't jerked, yanked and bs'd til my hair turned blue. Barbara was super helpful, had tons of information, and was a truly delightful person to speak with! She told me how to request services from our RC, and Kim, our RC SC got back to me within the hour with an authorization! Yeah Barbara and Kim!

Okay so the reason I am wiggy about this is multi fold. First of all, it's The Junior Blind. As in BLIND, for crying out loud! And secondly, I still don't know just how bad Jack's visual impairment is because that referral to Dr B at the big children's hospital got cancelled by our health plan when they decided to send us somewhere else. Catherine over at Hang on Little Tomato had a bad experience with him, so it's just as well. I've had it up to here ( * ) with rotten doctors. This one sounded like an asshat. My words, not hers. And that referral, or lack thereof, is just one of the reasons I've been on the phone all danged day! If I have the stamina, and you have the fortitude to read it, I'll go into the other million phone calls. So even though I know what Jack's visual impairment is, I still don't know how severe it is. Or if it is debilitating. Or if it can be treated and to what degree of success. Is he going to go blind eventually? That idea is a bigger nightmare than I am equipped to face.

And now it looks like we're heading off to the ER. Jack went from 98.9 to 103.3 in thirty minutes...

Post script: we're home after five hours in the ER. Two ear infections. Poor Babyhead! Now that his fever is down, he is my happy smiling little Goobler Elf once again!

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