...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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Friday, August 27, 2010

Let the Hostilities Reign!

So late yesterday afternoon I retrieved a message from voice mail from Miss F. She had been really lucky to find someone for us, since again she was working with such a limited time frame. That someone would be Miss S and she would be in our home to shadow Miss H this next Tuesday, if that's alright with you. So I let the clock tick down and waited until after 5 to leave a voicemail for her. After the day we'd already had, I simply was not up to more of her games, even though by her voice inflections, she was rarin' to go. Yes, that would be fine, and oh, I just knew you'd be able to find someone! Since you were so successful, I'd like to change some things with Miss H being here for four hours on Tuesdays. It doesn't really work for us anymore. I don't want Miss H to leave us until you can find someone for the other child for two hours, but I do want to change this arrangement as soon as you can find someone for those other two hours. Or maybe even all four, depending on what Heather wants to do. Thank you! Bye! All very cheerful and congratulatory in my tone, like nothing else in the world was on my mind!

So Friday I received a very stilted and curt call from Miss H to tell me again that Miss S would be shadowing her Tuesday, if that was alright. I told her that Miss F had already called and that I'd left a message saying that it was fine. And then for the next surprise. It seems that Miss H was talking about someone else other than Miss S. My desire to have Miss H here for only two hours represented a conflict for her, since she has another case at 6:30 right down the street from us, so she would be dropping us and she would be bringing another person on Tuesday to shadow us as well. If that was okay. So again with the overly cheerful response, like maybe I'd smoked a bowl and was perfectly happy that my head was on fire because I don't care - I've just smoked a bowl! (Do we have any nachos?) So I said, "Oh sure. That would be fine! I'll see you Tuesday!" I got the idea that she was trying to draw me into an argument or conflict because she kept asking If you're sure, If that's okay, If that doesn't cause any problems for you. "Nope! That will be fine and we'll see you on Tuesday!" And I hung up! I've had about a zillion conversations with Miss H over the phone. This one had none of the cooperative tone of any of the others, even though we didn't always agree with each other. Yep. Miss H is definitely a disciple of the Church of Miss F and her line of bullying and bullshit. To them I have this to say:


Post script: The Girlie was sitting on the floor playing with Legos while I related this newest development with the ART to The Beloved. When she realized that Miss H would soon be a thing of the past, a sly smile crept across her face. It quickly turned into radiant beaming when I confirmed that Miss H's days were numbered. We have not told The Poddest of Pods yet, as he will be much more direct and much more succinct in his happiness with this new development, and he will likely say what's on his mind directly to Miss H. No matter. She can reap what she has sown.

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