...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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Wednesday, January 12, 2011

There He Goes...

Even if I'm not ready for it, Jack scooted across the floor about a million times for Laurie from the Junior Blind this afternoon. Jack's OT and PT cannot get him to do things no matter how they try. Jack has been sitting unsupported on the soft couch for at least a month now for Laurie, and will sit unsupported on the floor for Anna from EI, for brief periods. Today Anna had him "putting in" at least a dozen times this morning, something that has him arching his back and squeaking and pulling his hand away when Beth tries to get him to "put in." Laurie was here this afternoon, and Jack reached right "in" to a container a dozen or more times to retrieve a toy, again something that has him arching and squeaking and requires much patient coaching when Beth tries to get him to do it. Both Beth from OT and Jean from PT walk in the door and Jack puts on his "not gonna do it" face. He seems to really like both Beth and Jean, and he gets happy when they arrive and is full of smiles, but he knows that they work him and make him move his body in certain ways that he would rather not. There's a clear mischievousness to the glint in his eyes and a firm resolve in his chubby cheeks when he works with them. Truly, there seems to be a challenge issued anew with every visit, "Okay ladies, who's going to win today, me or you?" and the challenge is on. Today with Laurie the toy placed 2' away had him scooting on his belly army style until he could grab it! And he did it over and over again. None of the flattening out and rolling away like when Jean tries to get him to scoot. None of the arm flailing and threats to cry. None of it. Just scooting merrily toward the toy. Dang it all! And as for the pivoting that Jean has put heroic efforts into getting him to accomplish? He pivoted a full 360* for Laurie today, twice left and then a full circle right! I'd just gotten over my struggles with the clear fact that Jack would not be walking by his first birthday. Then it slowly sunk in just how wonderful it will be that Jack will be a baby longer. And so I started to really be fine with his delays. Took me long enough, huh? And then he did all those "skills and abilities" today. From the action he's showing with his legs, Laurie gives him about a week before he's doing a formal crawl. I have to agree. Danged kid! I am super proud of him, and it made my little heart swell with joy that he succeeded, but now that he's shown that he can do it, he needs to stop! Because I want him to stay my baby longer. Sniffle...

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