...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




Lilypie Second Birthday tickers
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

Day Two

The morning came and with it my pain meds and a breakfast tray I had absolutely no interest in. I made myself eat so I could produce milk. So far I'd only managed to provide My Little Dumpling with less than an ounce of colostrum two different times. I got up to shower. No water in the history of mankind has ever been so soothing to the soul as that shower was! I dressed and called the nurse for fresh linens. When she brought them, she asked out loud, "Why didn't the aid finish the bed?" Oh, I did that, both of us eyeing my stripped bed in the high position for ease of remaking, and the pile of dirty linens on the floor next to it. Of course she scolded me. She made my bed in short order and then ordered me back into it. "But I want to go down to NICU," I said. "Not today hon, he's coming to you!" And it was right on cue that a NICU nurse wheeled My Little Bunny back into my room in his giant Baby Easy Bake and transferred him to his normal sized isolette! Oh happy day! He'd officially been sprung from the NICU!

And the nurse was sure to post Willie's NICU name sign at the head of his isolette!

Shortly after My Sweet Boy returned to my room, another gal came in wheeling a long flat table like thing. It seems Jack was to have a hearing test. She attached sticky tabs to his forehead, temples and the back of his head and put clear kidney shaped plastic cups over his ears. It took about a half hour to determine that while Jack could hear, he wasn't going to pass his hearing test today. She assured me that most cesarean babies do not pass on their first tries, not to worry, that it was probably just fluid in his ear canals. They would try again tomorrow.

We spent our first full day together in semi drugged bliss. My pain level remained quite high. After each dose of meds I was really fine for about two and a half hours, but when it came back it came back with a vengeance. And we had a visitor!

This is The Other Mommy!

Between first The Other Mommy in the early afternoon, and then The Dear Daddy and I, Willie got 35 ounces of formula every three hours and then a burp and diaper change. I added whatever amounts I was able to produce to his formula. The Dear Daddy finally decided he was gentle enough to hold his tiny son without crushing him and he was quite the pro and feeding him and patting a burp out of him! There's nothing quite so fine as the special look in a father's eyes as he looks at his newborn. It makes a woman's heart get all squishy. And there was something different there this time. That word again, different. I wasn't able to define it then and I still am not. It went beyond tenderness. It went beyond awe. It went beyond love. I have no earthly words to describe what I saw in My Loves eyes while he looked at tiny little William. The best I can come up with is sacred.

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