...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, August 26, 2009

What Have We Gotten Ourselves Into?

The Beloved and I were sitting on the couch relaxing when it seemed to him to be a good time for some discussion. Not so much for me, but I have to take it when I can. He's still of the view that I decided to "do this" without any say so from him, so he just has to deal with it. "I know you and the kids are all excited about this so I just have to go along with it," he said calmly. I said "Yes, the kids are excited, but me - not so much." It had already been a long full day of beating myself up about this Ds diagnosis, and I just wasn't feeling up to the task of another baby with challenges. I'd spent the entire day playing the "What If" game where you question everything you ever did, said, thought, or thought of doing right up until the diagnosis.

But since he was willing to listen, and I had his attention by saying that I wasn't all that excited, I decided to make it count. I told him I was terrified of this baby. I said that since our other two already had special needs, it seemed monumental to me to have another one with special needs. I said I didn't feel up to it. That even if the other two were normal (starting to hate that word) I just didn't think I could rise to the challenge. I admitted that I am already too tired to take on the whole medical arena as it is, and there is a trend to brush aside babies with Down syndrome because they are viewed as worth less effort than typical babies. I said I was afraid that Our Baby would be brushed aside when he needed something. And would I even know what he needed?

And I admitted that I had come to detest seeing babies out in public. Normal babies. Because Ours would not be. And it hurt. And there was nothing I could do about it. And for all of my pleas to God, he'd decided Our baby was good as is. He said, "Well, the decision has already been made. You'll just have to do what you have to to make sure he has everything he needs." By now I was sobbing into my hands in a pool of snot. True to his normal self, he came over and folded me up in his strong arms and held me against his broad chest. "I'm getting snot all over you" I sniffled. He said he didn't care and went on to say all manner of kind and comforting things. He would not have comforted me just because decorum required it, and he has never been one to say things he doesn't mean. "I told you before that you are the strong one," he says into my hair. He has said that to me before, right after my stroke just 9 months ago, but it's simply not true!

I am NOT the strong one. He's always been the stronger one, the sensible one, the one I go to when I don't know what to do, the one who always has the right answer, and if not the answer, at least a good plan. So, after much rocking and swaying and comforting, all seemed well. Or at least better.

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