...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, September 23, 2009

The Tour & Monsters

Tonight I toured the birthing center at the local hopspittle where the Jackster will be born. It was quite an awe inspiring moment to walk into the birthing room and see the warming table all decked out and waiting to receive a fresh baby. I won't be delivering in one of those rooms because I'm having another cesarean, but the table will be the same exact thing waiting to receive our pink, wet, wiggly Baby Boy. If all goes well and he isn't whisked off the the NICU right away. Yes, that's what I thought as I approached the warming table. This worry is killing me. Next the nurse giving the tour walked all of The Waddles down the hall to see a room we'd be in after delivery. While we walked, another older mom sidled up to me to ask if this my my first or last. She mentioned that she thought it was her last because she was 43. I said I was 44 and we engaged in a little joking commiseration about how much harder it was on our bodies at our ages. She seemed open and friendly so I asked if she'd had any prenatal testing. She got a look on her face like maybe I'd farted and said "Oh noooo! We would never do that!" Clearly, the only people who test are monsters. "We're Christians," she now said with a pinched face, "We don't do that!" I let the space increase between us and moved to the side and as others came between us I muttered "Oh." And for the remainder of the tour I stayed as far away from her as possible. The way she said those few words made me feel dirty. Her words made me feel unworthy. Unclean. Why I felt this way is beyond me. We are Christian. We opted to test. We braved The Hard News. I started researching right away to find out how to care for My Baby with Down syndrome. And I've stumbled upon stories that sometimes battered my soul. Some families who do prenatal testing are given devastating news. Their babies will not live. The few that do survive pregnancy will survive birth by a few hours at most. If you can stand having your heart broken, you can read about Sweet Little Eliot. Just seeing his picture while trying to create a link has me crying and feeling deep soul wrenching pain once again, and I didn't even read through the story this time. That family did indeed get devastating news. And they still chose to give their Dear Little Eliot a chance at life. Stories like theirs have made me come to know that Down syndrome is so totally doable. People who choose to test are not monsters. I don't know why that woman's words made me feel like filth, but in the end it just made me even more protective of My Sweet Spud.

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