...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, November 18, 2009

6 Days Old

This morning Baby Jack wolfed down a whole two ounces! Then after a burp and a diaper change, he went back to sleep! We went for his first visit to the neonatologist today, the same one he'd been seen by in the hopspittle. I don't much like him. We were shown into a small triage area where I undressed William down to his diaper. Then I was to remove the diaper and hold him in the air to let the infant scale go back to zero. He weighed 5 pounds, 12 ounces. Not bad. Same weight he'd had upon discharge from the hopspittle. The nurse measured him at 18" long but that was 1/2" shorter than he was at birth. The nurse said to diaper him and wrap him in a blanket. Then she showed us down the hall to an exam room. It was small and dreary, but it was clean.

It wasn't long before the doctor came in. The first thing he did was try to fold William in half to show me how "These babies are very flexible," meaning babies with Down syndrome. I didn't like him generalizing my baby. I'd asked him if William had Brushfield spots. So he tried to pry William's eye open. Well, Will was having none of that and clamped his eyes shut tight, made the little pouty lip and then let loose with a howl to beat the band. "Well I cannot see if he does or not." He completed his exam, asked how well and how often he was eating, was it breast milk or formula and all the other questions you'd expect from a first visit. He said he wanted Will drawn for the karyotype, but it didn't need to be drawn today. Make an appointment for one month on the way out. Warm guy. Not! I'd shown him the papers that said Will was to have a bilirubin level drawn but he said there was no need, that he wasn't yellow anywhere. I'd also asked him to look at the paperwork for Targeted Nutritional Intervention, but as soon as he saw what it was, he dismissed my question entirely. "The baby has Down syndrome. You cannot change that with a bunch of vitamins." I said I had no allusions about making the Ds go away, I simply wanted to compensate for the metabolic challenges present in the vast majority of children and babies with Ds. To which he said, "It isn't proven. I cannot recommend it." Period. Then he left!

William has been holding his head up quite well while being held over the shoulder. And this morning he was awake for a good hour, waving his arms, kicking his legs, and every now and then, opening his eyes to look around. I've gotten quite used to watching his face with his eyes closed tight. I suppose he will open them when there's something he wants to see. So far it looks like his eyes might be a deep slate blue. Pretty!

William has developed a dime sized spot of diaper rash on the left side of his little bum. I'm keeping Desitin on it and it isn't getting any worse.

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