...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, May 9, 2010

Mother's Day

Last year at this time, Mother's Day, I was 10 weeks pregnant with our Little Bonus Boy! I'd love to say that I had a journal posting to look back on, that I'd written flowing lines of flowery prose about the wonder of spending my days in misty-eyed euphoria as I waited for the magical harps and the ethereous singing from the heavens as our baby arrived into the world in a cloud of sheer bliss. This is the part where you imagine that horrible sound of a needle skittering across your favorite LP, but no one knows what those are anymore! Just imagine screeching tires and the commensurate odor of burning tire rubber instead! The simple fact is that I don't. I looked back and I didn't even write a journal entry on that day last year.
I was too afraid.

What I remember is being scared...of so many things. Mostly that this baby would follow Hannah to Heaven before we got to know him or her. That as each week passed and the baby was still fine, I'd come to feel secure only to have it end again so suddenly. That the baby would have chromosomal abnormalities. That the thing I feared so deeply, the thing that I already knew deep in my soul, would eventually be spoken out loud, that the fear would become words and the words a reality, and the reality our baby. I was so afraid of losing this baby, in whichever form loss was to take.

However, I have a different perspective now, having survived what can only be described as a hellish physically tortured pregnancy, and don't even get me started on the emotions. If you're here as a fellow Mom to a baby with extra chromosomes, you already know the torment of the unknown. If you're here because you've just gotten the news about that little extra bit of DNA, again, you are living the torment and fear and I don't need to tell you! But what you might need to know, what someone does need to tell all of you Ladies in Waiting, I am quite certain that the angels in Heaven did indeed sing while Will took his first breaths!

I am so, so very sorry that I ever cried tears that Will would have Down syndrome. Of course I needed to do that, and it was a natural process. It was necessary to go through all of that hurt, anger, sadness, disappointment. That outright despair. It was cleansing. And what it left was fear. Terror. After all, we'd gotten tragic news. At this late stage of our lives we were anticipating a child with major health issues. Surgeries. Therapies. Disabilities. Differences. Everyone expressed such sorrow. Such regret. What were we to do, they asked. Our lives would never be the same, they said. But from where I sit now, watching my sweet little darling boy sitting upright in his swing to grab at toys...well I wish I could have fast forwarded to just one moment of this Mother's Day.

To get just a glimpse of this darling, happy, healthy and delightful little baby. To see how normal our lives still are. And how mundane unloading the dishwasher still is. And how I still despise dusting. And folding the ginormous load of white clothes still makes me cringe. And the happy smile I still get when my Middle Little hops off the bus bouncing. Of how I still feel complete when My Girlie arrives from her bus, twenty minutes after The Middle. Of how The Dear Daddy's arrival home is still one of the best parts of the day. Of how the roses in the front yard still bloom just as red. Of how declarations of love from My Middle Little are still so sincere. There are some things that are different ever since Will. We have a few more doctors appointments and we have various services like OT, PT, EI and SLP. The major things that have changed in our lives are quite significant. For instance...

...I start my days with a tiny being cooing in the cradle next to me. My Girlie gets a live baby doll to play with. Both of My Olders get to have and take pride in some small amount of responsibility for someone smaller than themselves. The Dear Daddy has another Little to look forward to at the end of the day. We all have this new little life to celebrate and enjoy so very much. The Littles spend their weekends with their ears perked for the first sign that Will is waking from a nap. The Dear Daddy does not...he just goes and picks him up even if he's asleep, and then pesters him until he's awake enough to play! There's a little less room in the cargo hatch because a stroller now occupies that space. Soon we will take down a baby swing and then add a high chair to the dining room. And while it's all so very normal, so common place with a new baby in the house, it is singularly extraordinary as well. It is phenomenal. It is inordinate. And it's ours. All ours. Ever since Will.

And now there is One More Little to add to the Pile o' Puppies...
Now that's what I call a dog pile!
Yes, that is a deadly pit bull on the bottom of the pile!
If The Girlie doesn't plop down on top of Sophie, she worms her way behind The Girlie's back and then lays down behind her and then wiggles until she is literally under her.
We've had to stop letting Princess and Sophie out at the same time because it's an all out free for all to see which one of them can lick Jack's head sloppy wet first!
Princess is happy to snuggle up with her Pod-Pie.

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