...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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Friday, November 13, 2009


For my second trip down that long hall to the NICU, I was armed with premedication and the nurse set me up to push a wheelchair for balance. It was a painful trip all the same, but my Little Jax was waiting. Once there I did the 3 minute scrub and then manned my wheelchair. And got lost. It seemed I'd forked right when I should have forked left. I made it there by way of seeing other babies who were truly tiny and being assisted by ventilators. Their incubators were draped to keep out light. Some of them were laying on glowing blue lights. As I pushed along the hall I thanked my God that Jack was doing well.

I was just in time to open Jack's isolette and change his diaper. And then something wonderful! "He poopied!" I said to the nurse. "That means his bowel is intact, right?" She came over to see the meconium. "Yes, that's what that means. I've been waiting for that!" And more good news, his oxygen had been reduced to .25L. His vital signs were all stable and had not wavered. Once again, he was taken off the oxygen to eat.

He was allowed out of his isolette for another 30 minute period. It took him almost that long to eat that ounce and quite a bit ran down his chin. The nurse said it might take him a while to learn how to suck, swallow and breath, but his wet diapers and now the poopy were indications that he was getting enough. The nurse showed me how to hold him upright and forward on my lap with his chin cradled into my hand and my fingers under his armpits to burp him. His little face was puffier than it had been and his little chin was no longer so pointy. His IV was now in his foot and I noticed that both of his little hands bore bruises and little poke holes from IV attempts.

Once he burped we had a few more minutes before he had to go back into the baby rotisserie. I sat looking at my newborn son. I was trying to take in all of him. His little face was now almost moon round and his eyes seemed to be even puffier. "Has he opened his eyes yet?" No, he mostly slept. Hadn't cried at all. Only fussed a little when he spit up. So we sat there, he and I. I whispered to him and noted that he turned his open mouth toward my finger stroking his cheek. His puffy little cheek.

I was trying to soak in this little being in my arms. I was trying to reconcile Down syndrome to my precious son. Clearly he had it. There was no denying his facial features. And the one straight line across each palm. The proof of the diagnosis was right there in front of me. But why didn't I feel heartbroken? Why was I not sobbing my eyes out? Why wasn't I filled with sadness every time I looked at him? Why wasn't that long trek down the hallway filled with dread? That is what I was expecting. But I was filled with anticipation while I waited for the secretary to allow me past the big doors and into the NICU. I wanted so very badly to rush my 3 minute scrub so I could see him. The trip down the long NICU hallway and one turn to the right was filled with urgency. I couldn't wait to feast my eyes on him. My Baby. With Down syndrome. This tiny little boy I was just getting to know, but felt that I'd known already for my whole life.

When the nurse said it was time I gingerly hoisted myself out of the rocking chair while holding him tightly to my chest. Once out of the chair and actually on my feet, it was really hard to straighten to a standing position. Once fully upright, I kissed his temple, whispered to him how much I loved him, and told him I would be back in a little while. And then I put him back into his toaster oven and tucked the U-shaped roll of blankets under his diapered bottom with a prayer to The Great I Am to keep him safe. I was sad indeed when I got back to my room and saw Jack's now empty isolette, seemingly abandoned there, along with his little socks.

When I got back to my room there were messages from The Beloved. The first one was to tell me he would be home in a few hours. The second was a progress update, and where was I? Was I sleeping? The third one was to tell me he was almost there, and where was I? He was getting worried. Call me. He sounded relieved when I got him on the phone. Where was I? It might have been the narcotics and it might have been the relief that we seemed to have turned full circle since I watched scared silly as Willie was taken from me that morning, and it may have just been sleep deprivation. It had completely slipped my mind that The Dear Daddy knew nothing of this whole day so far. I said I'd been down to the NICU to visit the baby. At the alarm in his voice I quickly backtracked to this morning, the respiratory distress, that he was doing really well now, that the cardiologist said he would be fine. "He's doing alright now?" He was alarmed. I kicked myself for blurting it out that way. "Yes, he's doing really well, his oxygen has been turned way down and I've gotten to hold him and feed him and change his diaper and the nurse said his vital signs have been great. He's doing good. Really." I told him how sorry I was that I'd just blurted it out but he said it was okay, I had enough on my mind worrying about the baby. He said he'd be here as soon as possible.

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