...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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Saturday, November 14, 2009

Again with the Giant Baby Boxes

After a good day of holding our Ducky and feeding him, burping him, changing his didees and watching him sleep, The Beloved went home to prepare for our anticipated home coming the next day. And about that diaper changing? That was all me. The Beloved has sworn off diaper changing because, "You always yell at me for doing it wrong and then you change it all over again!" To which I respond, "Well if you'd just pay attention just once and figure out how to do it so it doesn't leak I wouldn't have to do it over again!" It's a long tired old argument in our home, but one that I think I will let him win. Besides, Billie-Sue-Jim-Bob is quite prone to peeing everywhere!

I was sitting in bed holding My Lamb Chop and wondering at his little face, hands and fingers, nose, ears, and suddenly...he opened his eyes! It was just the tiniest little bit, but he did open them! I started speaking silly to him trying to encourage him to do it again! And he did! It wasn't nearly enough for me to see what color they are, but it was enough to have me spend the next 30 minutes trying to get a picture of it!




I made the long painful trek across the room to figure out how to turn on the bright lights as I'd only had the dim soft lights on over my bed. And of course, The Jack Snack promptly decided that was enough eye opening for the day. He hadn't looked at me, and I don't think he really had them open for long enough to see anything, but he did finally open them! He really did have eyes in there of a dark color. Probably newborn blue.

And then...dang it all if a nurse didn't come into our room with another giant baby box! I was immediately alarmed. "You aren't taking him again are you?" No, she said, he would stay in my room with me. If anything, this new baby rotisserie was even bigger than the one he was in before. She went about plugging in the giant box and then plugging in other equipment and putting it inside while she explained what it was all for. It seems that Jackie-Boys liver was still too immature to handle his own metabolic waste and his bilirubin levels were rising. They wanted to stop that process before it got dangerous for him and help him to break down the waste. She instructed me to undress him down to his diaper.

I have to admit that my heart hammered a little while I got my Sweet Little Spud naked once again. Once he was stripped the nurse poked him gently in a few places to show me that he was indeed getting a wee bit yellow. Maybe I'd have to call him Yam instead of Spud. I'd thought yesterday that he was looking a tad squash colored, but he'd been in the NICU! I thought for sure that if he was having problems they would have said. Well...now they'd said! And into the box he went. He was stripped down and placed onto a fabric like pad that glowed neon purplish blue. A funny looking grey foam shield shaped comically like sunglasses was strapped to his head to prevent damage to his eyes. Another bright goose-necked lamp was positioned to shine onto his tummy.

The nurse brought me another pain shot and then I hobbled over to The Box so she could show me how to operate it. She said I could take him out every three hours to feed, burp and diaper him. Again with the three hours! She admonished that if I didn't follow the rules, he'd be taken back to NICU for his phototherapy. I promised dutifully that I would. Of course I would! It was what was best for him! And he at least got to stay with me this time! She showed me how to open the doors, different than the NICU box, and how to shut off the alarm if it was open too long. She showed me how to open the lid to take him out. No clothes, no socks, no blankets. And she left. With my Bunchkin now glowing like a shooting star.

Not being able to hold My Little Yam certainly put a damper on the evening's festivities. I did figure out how to pull his Easy Bake away from the wall and closer to my bed so I could at least see him. And the goose-necked lamp cord length dictated that I had to move it back a few feet. Dang. But I could still see him! I watched the clock and every three hours I took him out, diapered him to wake him up, fed him, burped him, and mourned the minutes that slipped away too fast until I had to put him back in.

In the middle of the night Jack wouldn't stop fussing. I stood at his side for about an hour stroking his tummy and whispering to him, but every time pain overwhelmed me and I wanted to get back into bed, he started crying again. I simply could not tolerate to hear my Sweet Little Dolly of a baby cry, so I'd lean there again with my arms stuck into the little holes so I could stroke him. That his cries were so weak and plaintive just made it all the more heart breaking. Finally I opened the lid and scooped him out. I'd noticed they'd given him a pacifier in the NICU, a big round ugly green job that wasn't at all cute, so I gave him the one I'd brought for him and snuggled him to me. I carefully laid him back into the giant box and stroked him for a few more minutes until he was asleep. As soon as I stopped, he started fussing and waiving his arms and legs and kicking. I called for the nurse and when she came in she showed me how to bundle up blankets into that horse shoe shape and settled him into it. He was happy with that. It made him feel more secure, she said. I felt like crap that I hadn't known that. I started to cry. The nurse sent me back to bed.

She came back in a few minutes with a pain shot. As she was giving me the injection with one hand and patting my shoulder with the other she said, "You're having quite a bit more pain tonight." I looked up to nod my tear streaked face at her and she gave me a look that made her face morph into that of my Mother's. And she was giving me a look that I remember my Mother giving me. A look that said, "I know what you did!" Her glasses slipped to the end of her nose when she tipped her head to look down at me. "It seems you might have hurt yourself moving the isolette and lamps closer to your bed." I said nothing. Guilty as charged. I'd been busted. Even though she was the night nurse and I'd moved The Box after the day nurse went off duty and before the night nurse made her rounds. "And I hear you stripped your own bed this morning." She tsk'd at me! "You aren't on the housekeeping crew. You need to act like a patient, not a nurse!" With that she informed me that I was to stay in bed for the rest of the night. She would be back to feed the baby and she would let me hold him for a few minutes after he was burped. "No arguing!" And she turned down the lights and left.

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