...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, June 24, 2009

Oh, The Amnio

So, again with the needles and the poking me. But first, I thought I was going to have to pick The Beloved up off the floor when he saw the scale and the flashing red numbers they revealed. Oh, the look of amazement and horrified wonder on his face could only be matched by the look of homicidal rage I returned to him. It spoke volumes. It screamed, "YOU did this to me! YOU deal with it and keep your mouth SHUT! Ya hear?" Okay, so it wasn't nearly so dramatic or violent. I meekly pointed to my ankles and calves and said, "It's all right there!" Wisely, he just smiled. In all honesty, it was a shock to me as well. Fluid or not, packing 30# onto my previously, finally sleek and slim body was a killer. I'd always been heavy. With The Oldest I'd lost weight during the first half of the pregnancy and was only 13# heavier when I delivered her. With The Youngest, Soon-To-Be-Middle, I'd lost a lot of weight and had barely caught up to my pre-pregnant weight when I delivered him. This time, starting out 70# lighter than at any other time it my adult life, plus the beautifully soft curves than only aging maturing brings, I'd finally had a pretty rockin' body!

But we're here, so we might as well get started! I get over my shock, drop my drawers and lumber up onto the table. The tech got started and then the office gal popped in to take her order for In-N-Out Burger. We put in our order too and had a good chuckle. The mood started off so light! The tech did the usual extensive scan but she wasn't nearly as chatty and informative as usual. Then she stepped outside to tell Dr S her findings. I heard her say that the ventricles looked a little dilated. Which ventricles? The heart? The brain? Then the beloved Dr S came in. He looked like he was on his last leg. He sat on the stool and hung his head over his folded arms - not an easy task for a man his size. "I am exhausted," he says. "I am so tired! How about you? How are you feeling my dear?" and again with the hand holding. Ever since Hannah, Dr S had made me feel more like his daughter than his patient. So I get right to the point and ask him which ventricles look dilated. "The brain" he says, "but let's look and see." He repeated what was already an extensive ultra sound. He had to be sure of the exact location of the Baby before poking any needles in there. He said that the heart looked fine, with a very small calcium foci not uncommon at this stage. He said the brain ventricles did measure a little dilated, as well as slight dilation to both kidneys. He asked again how far along we were and then said, "Oh of course they all look big. The ventricles start large and get smaller as the brain grows." But I wasn't really comforted by that news. His demeanor was just a little off, more than I could account for with fatigue.

Next he prepped my bulging belly for the amnio. While Dr S was scrubbing my tummy, The Beloved started making motions that he could do it if I wanted. I told Dr S that he was offering. Dr S jokingly said he'd demonstrate this time and then he could do the next patient. He even said, "In fact, you can do the next one at home. You don't even have to bother with an office visit." He explained everything he was doing and let me know he wasn't stabbing me yet, just pressing a small hollow tube against my belly to "Mark The Spot!" And then the tech started scanning again to make sure The Newest hadn't moved. And then the poke. First a huge hollow bore stylus through the skin and muscle. Not too bad. Then the first poke into my uterus. And the second. And the third. There's a lot of scar tissue on my uterus and it was very hard to puncture. The Beloved later said that he was waiting for the doctor to jump up on the table and straddle me to get his weight behind the pushing force. Let me tell you, that hurt like #$@&! And it continued to hurt. With The Youngest, it only hurt for the puncturing. With this one, it hurt long, long after. Deep, zinging electrical pain. The doc threaded the catheter in and got the fluid. Nice and clear he said. And when he pulled the stylus out I thought he was dragging my uterus and both kidneys out with it! And a few feet of intestine! Crap! That hurt! It continued to hurt for a good ten minutes and Dr S said he could see my uterus contracting, not to worry, it was normal considering he'd had to poke so many times. The Beloved stood on one side holding my hand and wiping my face, and the beloved Dr S stood on the other side holding my hand and wiping my face. There's always some way to wind up with tears in your ears.

So once I had a band aid over the spot, and my uterus finally relaxed, Dr S started scanning again. He saw no evidence of bleeding. He was focused again on the brain. I asked him to let us know if he saw the Baby's 'parts' but he said simply, "That's not what I'm concerned with right now." It really threw a wet blanket on The Beloved getting to see the baby. When he was all finished he repeated the post instructions, said it was okay to drive through In-N-Out Burger, and sent us home.

I called my good friend Bits on the way home. She knows about these things and is still one of The Few who know we are pregnant. She comforts me and by the time we get through the drive through I am able to tell The Beloved what she said and he feels a little better too. But just a little.

Once home we ate our burgers and made a call to The Other Mommy to let the kids know that Mommy and Daddy were home safe and sound. Then we took a nap, as ordered. The Beloved tucks me in. Always. I think this started when I had my stroke...but since the stroke my memory is shot, so I don't really know for sure when it started. I'm pretty sure that the first time was just after we'd gotten home from the hopspittle and I was getting into bed to nap. My right arm had been a limp dead fish that I had no control over, but was amazingly painful at all times. He'd gotten my right arm positioned 'just so' on the pillow and he covered me up. I do know that he's done it every time since. Every time. Even when we've been bickering or are unhappy with each other. And this time as he leaned in to kiss me I whispered in a tiny voice, "I'm scared." He knew. He was too. So we spooned and slept and rested our souls.

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