...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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Tuesday, July 14, 2009

A Day for Tears




I have been extremely blue and prone to tears for much of the day. I got a good nap in while Susie was here, but I am still exhausted. And that damnable pepto-pink is giving me fits! Today I picked up a forth gallon of primer. And I haven't been using the cheap stuff either. I've been using the expensive stuff guaranteed to cover anything. The stuff I'd used four years ago when we first moved in to cover the Thomas The Train blue in The Youngest's bedroom! Who paints their kid's room that awful bright blue? I guess people who paint their kid's room pepto-pink!

I went to the beloved Dr S's office to pick up the amnio report. When the office gal went to verify that Dr S said I could have it, he came out himself to greet me. "Tracy," he said, taking my hands, "How are you doing, my dear?" I assured him that I was doing well and that I'd already begun researching the best and most recent therapies for babies with Down syndrome. "Okay sweetheart. That is good. We will see you in just a few weeks. If you have any problems, anything at all, you call me." So I left his office and sat in the van reading the amnio report. I had a copy in my hand of Jack's karyotype. His genes. And there it was. Three copies of chromosome 21. And a laundry list, in print, of things that can be wrong with My Baby. I sat in the van and had a good long cry before I pulled myself together and drove away.

The Incredible Miss S called me this afternoon to say what a beautiful job I'd done on the pregnancy announcements. It gave my spirits an incredible lift. Not only to speak of The Baby in a positive and cheerful fashion, but just to hear her and catch up on all the things we seldom get to speak of in our passing greetings to each other on-line.

The call from The Incredible Miss S also made me realise that others had gotten their announcements too. Including Mom and Dad in Idaho. Whom I had here-to-fore been too cowardly to tell myself. Shameful. But there it is. But really, I'd wanted to tell them we were having another Baby at the same time we told them the gender. And by the time we knew it was a boy, so much had gotten so much more complicated. Yes, I had taken the cowardly way out, but I think it was purely out of self preservation.

In the evening, The Dear Daddy arrived home in a huge green truck with 15 yards of soil amendment for the backyard. The Girls, no the Other Girls, Sophie and Princess, had destroyed the sprinklers the previous summer and we'd both been too busy with life to get them repaired in a timely manner. Consequently, the grass had died and it was a barren wasteland. And the grass had never been that great anyway, so we were starting over from scratch. Hence the need for 15 yards of soil amendment. The Littles ran out to the front lawn the watch The Dear Daddy operate the gears to lift the back of the truck and dump the pile into the driveway. When he joined us on the lawn he kissed The Littles and ruffed their hair. Once inside the house we made some small talk but he had a hard time meeting my eyes. Instead, he went off to take a nap.

I used the time to finish the primer in the nursery closet and to paint the door. I tried to be alone with my thoughts, but this was the favorite new place for The Littles to hang out and they were keeping up a steady stream of questions and bickering with each other. Kids do that. Especially The Littles.

Dinner that night was a casual affair of pizza and television. The Dear Daddy was busy engaging The Littles about how they'd spent their day, so I wandered back into the nursery to check the coverage of the primer. And then I decided to take a few minutes to seal the window on the inside. Imagine my surprise when I turned to see The Beloved standing there. He asked why I wasn't using a caulking gun and I explained that I wasn't good with one, that it was easier for me to do it by hand. He started listing the supplies he'd need to seal the window from the outside and that he'd do the shopping for that so I wouldn't have to. Then the moment passed and he returned to the living room and I went to take a shower. It was a start, at least.
We went to bed after midnight having said very little to each other that wasn't small talk. I was reminded of the time two months after my stroke when I'd suddenly regained my full range of speech and vocabulary. He'd hugged me and said how much he'd missed sitting around in the evening just talking with me. Now I was missing it.

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