...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, August 2, 2009

22 Weeks and Baby Clothes

Here I am at 22 weeks. The Girlie and I sorted through the baby clothes again and started the fun task of washing, folding and putting them away. It was a fun task, but also a heart tugger. I could easily remember The Girlie when she was tiny wearing some of these things. Since her gender was a surprise, there were plenty of unisex baby items when she arrived. And of course, these same little pieces of baby magic were worn by The-Youngest, Soon-To-Be-Middle and I could easily remember his soft little squishy plump baby body nestled in them as well. Again I wonder will Jack be dark haired and olive eyed like My Girlie or blonde and blue like My Fireball? A combination of the two? Or will his Down syndrome make him look completely different than any of us. From any of us. Only time will tell.

I love him dearly already, but at the same time I am terrified of meeting him. Will I know him? Will he look so foreign to me that I won't be able to bond with him? Will he feel in his first moments of life completely abandoned by the one sacred love every newborn should be guaranteed? Or worse, will he be born with problems that send him to the NICU for weeks or even months of being too fragile for me to stroke his skin and hold him so he can feel my love? Between my fear of him and my fear for him, I am a wreck. I have no delusions that we will all have a challenging time when he arrives. I can easily envision endless doctors appointments, therapy appointments, days on end of constant stimulation of every kind. I feel up to those tasks, the things I have researched, the things I have learned will be crucial for him, the things other parents have described as the most beneficial for babies with Down syndrome. It's the unknown that is tearing me up. Will he need heart surgery within months of birth? Will he need bowel surgery within hours of birth? Will he require life support during his first hours or days...or months. And that awful nagging fear, the worst fear of all...will I know him? I think we will all be fine, but as any mother trying to envision the baby growing within, it is a huge unknown.

Grandma Emmie visited today! The Littles had barely let her get inside the door before dragging her down the hall to the nursery! She was suitably amazed! "Where did you find all this baby furniture? I thought you weren't going to buy anything!" She knew that Bits had loaned us the crib but she hadn't expected it to look so new! And then I pointed out how we'd put other pieces together from my tea room from our first home. She was the voice of enthusiasm as we recalled where those pieces had been located and how perfectly they all went together now for a new purpose. "It really looks like it all goes together! I thought maybe you'd hit a really good bargain sale or something!" My good friend is always a balm to my soul. She never visits without leaving me feeling refreshed, revitalized and renewed. She makes me feel capable. And right now, that simple thing, capable, is vital to my well being.

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