...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

MusicPlaylistView Profile
Create a playlist at MixPod.com

Friday, November 13, 2009


I was sitting there in the NICU holding My Little Bundle when I looked up to see The Dear Daddy standing just outside the entry to Jack's room. As he came closer his eyes were on his son. I could smell the soap from his 3 minute scrub as he leaned in to kiss me. It was just so good that he was home. He pulled up a chair next to us and wrapped his arm around me, us. After a few minutes of looking and eye wiping he asked again if he was really doing alright? Yes! He's been off oxygen for almost an hour. His vital signs are fine. He ate and pooped and burped and was doing just fine. He was even being allowed out of his box for a longer period!

I unwrapped Jack for a few minutes so his Daddy could see him. His tiny pink fingers wrapped around a giant finger when he touched his palm. His tiny little fingers couldn't close around my finger, much less his Dad's. The IV was now in the other foot, but it was capped off now. And he had a shirt on, and the socks I'd brought this time, lumpy from the IV hub. So we sat there staring at our baby. The Beloved spoke silly to him, just like he had to both of The Newborn Littles. What color are his eyes? "I don't know. He hasn't opened them for me or the nurse yet." He's awfully puffy isn't he? "Yes, but it will go away in a few days." I asked The Beloved if he wanted to hold him? "No!" immediate alarm in his eyes. "He's too small. I'm afraid I'd crush him." So we sat there holding each other, holding Will.

All too soon it was time to put him back into the Easy Bake. William's little forehead furrowed when his Dad's mustached lips kissed his nearly bald pink head. "Okay Baby Boy. You be good in your little box. Your Mom and I are going to get some rest." He kissed him again before the nurse lowered the top of the isolette, and I was struck once again by just how giant The Beloved looks to me, especially when framed by tiny little Jack in his giant isolette.

The trip back to my room was a hard one. I was in a lot of pain. The NICU nurse suggested that maybe I should stay in my room tonight, that our Little Bean would probably be with us by morning. I leaned heavily on The Beloved while we walked very slowly. Maybe I'd made too many trips on foot down that hall and back. Maybe I was in more pain than I had been. Maybe it was just that My Love was here now and I didn't have to carry it all myself.

We spent the evening together, soaking up the sight of each other. I took the NICU nurses advice and stayed put for the evening. When the night nurse came on duty I spoke with her on the phone and she assured me that she'd call immediately if there was any change to Jack's status. The Beloved looked exhausted. He was road worn and unshaven, but I pretty much like him that way. He was eyeing the roll away bed in the corner, but we both knew he would sleep better at home in a real bed. When he held me before leaving I breathed deeply of the sugar cookie smell in his jacket from his pipe tobacco. We held each other a long while before kissing each other good night. When he was gone I called the NICU for an update and was assured William was fine. No, he had not yet opened his eyes, maybe he was saving it for me? I went to sleep wondering what color his eyes would be. Olive like My Girlie, or blue like My Middle?

No comments: