...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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Sunday, November 7, 2010

Yeah, It's Me Again

So a few days ago, The Beloved and I were sitting on the couch with Jack, or Waby as he's now going by. Waby, the Beloved and I were playing. I'd called him at work immediately last Wednesday to report to him that "Your son is up on his hands and knees ROCKING!" And every day since then, when he's on the floor playing with Waby, I tell him, "Honey, teach him how to crawl." "Honey, show him how to crawl." "Honey, make him crawl!"

We were talking about how to celebrate the Waby's first birthday. Incidentally, The Beloved gave him that name ~ not his Mommy who loves him way too much to ever do such a thing. So, we've decided on a small little immediate family thing Friday night, his actual birthday, and we'll have cake, ice cream, 1 little candle (!!!!) and presents. The Buddy Walk is two days later, the next Sunday, so we're saving our party hats for the 20th of the month, hoping we won't be tired and cranky for party day. If you're in the area between noon and 6 pm, please do stop in for some cake and ice cream!!! Really...come on over!

So out of the blue, tears are welling in my eyes and I'm trying hard not to let The Beloved see it. But, he knows when I'm upset, even though I was really out of his line of sight, sitting somewhat behind him holding Waby. It's like the air changes or something. He just knows. And he's concerned. So I spill, once I trusted myself to speak and not squeak. I tell him that I'm just now realizing that Jack won't hit any of his milestones before he turns one. The Older Littles took off walking on their first birthdays. Not days before. Not days after. On their first birthdays. We have it on film and on video.

So...The Beloved being The Beloved, said that we knew he would have delays but that he's doing good, so let's not be upset by it. To which I say, me being me, that yes I knew this, and I'd adjusted my sights on smaller goals. Like crawling. Or at least sitting, for crying out loud. To which The Beloved pulled out his grizzly bear and said, "Don't be like that. He's already been hit with more than his fair share of hard knocks, don't put more on him. Cut him some slack." Wow. Not quite the support I was looking for.

So, we agreed that yes he is doing well and that he's healthy, and that it won't matter one whit in five years that he wasn't crawling, sitting, walking on his first birthday. But I was still sniffley. So The Beloved reeled in his claws enough to say, "I know you're a little upset that he's not doing everything the other two did, but try not to be upset while you're holding him because he already knows when you're sad. He loves you so much, more than any one else, and I don't think he understands when you're sad. I don't want him to think it's his fault." Dang. So I said, in my own defense (He was that adamant about it!) "Well it's not as if I walk around all day sobbing with him in my arms. You're just now hearing about this for the first time!" He says he knows, "Just be careful with him, I love him so much."

So yeah, it's me again, struggling just a little with the delays. Any other day of the week, I'm fine with it. I'll be fine with this too. As The Beloved pointed out in a more gentle and kinder tone, he's going to be our little baby longer than than the other two were. And that is a fine thing. Fine, indeed.

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