...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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Thursday, July 23, 2009

PHC, Carpet, Floor Boards & The Girlie

Today I was off to the PHC bright and early. I was unhappy that I had to leave Miss Susie to supervise the carpet installation, but there was nothing else to be done. And today I saw yet another practitioner, Dee - my fourth! But I liked her. Since I hadn't seen her before, she asked if I'd planned to have an amnio. I said the results were on the chart and that The Baby had trisomy 21. And then the inevitable, "Oh, I'm sooo sorry." And then the equally inevitable, "Down syndrome kids are sooo sweet and loving." But I still liked her. She had nothing to do with the amnio results and I felt like I might have blind-sided her just a little bit. I said that I didn't really think they were automatically sweet and loving, that I thought they just lacked the capacity for hatred and contempt that comes so easily to most people. She agreed. Then she increased my Methyldopa to 750 mg four times daily and ordered a boat load of labs. And another 24 hour pee test. Crap!

Another change today is that I have an appointment with the endocrinologist for next Tuesday, and Dee is moving my appointments up to every two weeks. "You are a kettle we need to keep from boiling over!" So with appointments cards and prescriptions and lab orders in hand, I rushed home to see the carpet!

I was happy with it and now the room looks so much better! The Dear Daddy has already cut the floor boards so I can start on those when it's cool this evening. In the Meantime, Grandma Emmie stopped over for a nice visit with me and The Littles. Grandma Emmie rocks and she always brings a bag full of books and goodies for the kidlets!

Then Miss Susie and I packed the brats into the van to go to Lowe's. Trust me when I say they were being brats! It all went downhill from there. The Dear Daddy took a job out of town but I needed to ask him something about the door moulding. He was crabby. Unless he changes his ways, he will be known from here on out as The Buttface. Or maybe just plain Buttface! Then we shopped and in general tried to keep The Brats from killing each other right there in the store with items pilfered from the hand tool section. And then we came home to work on the nursery. First I discovered that the floor board paint was streaky and needed to be redone. Again. The I found a whole long piece that I had entirely forgotten to even paint. Then I decided to put the floor boards in the closet, since it didn't really matter what those looked like. Anyone getting that close to those floor boards deserves to see streaks! But...the danged nails bent when I tried to nail them up! Consequently it took a lot longer to do that small little task. So then I decided to rehang the door. And now that the carpet and padding are in, the door with the previously 2" gap no longer fits! I could have forced it in, but it would have brushed the carpet with every swipe and ruined it.

And again with The Girlie. She's still worried that I will abort Jack-Jack. She was supposed to be sleeping but she called out to me when I walked past her bedroom. She was crying. I sat down on her bed and asked her why she had tears. She said she was afraid that I'd kill the baby with an abortion. I don't know what to tell the girl to convince her! While I wished fat thighs on who ever told my darling daughter that word, I gathered her into my lap. Or what was left of it. First I tried reason. I explained that Mommy wasn't working just so I could keep The Baby safe, that I went to the doctor's and never missed a single visit so I could keep The Baby safe, that now I would be going to the doctors every two weeks and then some so I could keep The Baby safe, that the handfuls of medicine she saw me take a million times a day was so that I could keep The Baby safe. And that I had that special test so that I would know how to take care of The Baby to keep him safe. She wouldn't be comforted. So I tried guilt. "Honey," I made her look at me, "Do you really think Mommy would lie to you?" Apparently so because she thought about it for a good ten seconds and then made me pinkie-swear. Finally she climbed out of my lap and fell asleep while I laid beside her stroking her hair. Poor Sweet Girlie. As I ease myself out of her bed I send a silent plea to God for her. If we lose this baby now she will be devastated. Please God, comfort her heart.

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