...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




Lilypie Second Birthday tickers
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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Monday, August 24, 2009

25 Weeks, Shopping & Missouri Barbecue

Today My Girlie and I went to meet My Big Sis at Babies R Us! It was so much fun! I finally felt free to buy a few things that we'll need. The nagging whispers are still there somewhere, but they are getting quieter and less upsetting. And it was really good to get to spend some time with My Big Sis! The Girlie, The Big Sis and I wandered over every inch of the store. It was really fun to watch My Girlie marvel over how tiny the baby clothes are. Of course she wanted to buy two of everything and had it been up to her we would have needed a moving van to transport the loot!

As it was, I'd already been going over my selections to make sure that I wasn't buying anything frivolous, that it was all stuff Jack would genuinely need. It really kinda sucks trying to outfit a new nursery while not earning my share of our usual household income and I'd had to tell The Girlie too many times that we couldn't get this or that yet because we couldn't quite afford it right now. Maybe later, I'd say. The solution was to let her choose between a selection of things I'd picked out. She made the final selection of bath towels and wash cloths, receiving blankets, crib sheets, this baby wash or that one? The tiny blue hair brush or the white one with bunnies on it? She even made a very deliberate decision of which water proof crib pads to buy: embossed stripes with a soft flannel top or embossed sheep which turned out to feel softer than the flannel? Sheep of course! Soft sheep! When we got to the register, My Big Sis emptied half of my loot onto the counter and while I was gobsmacked by a pyramid giant boxes of diapers, she paid for it before I even realized what she was doing! What a wonderful blessing! Soooo...we added two of the huge boxes of diapers to my loot. And I mean huge! These puppies have 264 diapers each!

A big THANK YOU to My Big Sis! Even more than the generosity of her incredible gift, it was an affirmation for me that Our New Little Baby is anticipated, will be celebrated, will be welcomed into loving arms just like any other baby. He has Down syndrome. And he is already as loved as he can be! I love you Sis!

After Babies R Us we hit a clothing shop to buy a few outfits for the Wee One. And then we went to my favorite barbecue place for a relaxing sit, happy chit chat, and the most awesome Missouri barbecued ham and beef sandwiches to be served on famous garlic toast ever! They are that good. Very little can compare to the sheer bliss that can be had when a pregnant woman gets to eat what she craves! A collective happy sigh went out at our table as we wrapped up a wonderful morning and afternoon with My Big Sis and My Girlie!

We arrived home from the valley just in time to welcome The Dear Daddy from his day at work. I surprised him with a yummy meal brought home from the restaurant - it's his favorite too! We had a relaxing evening and The Littles were happy and getting ready to settle into their beds with good night kisses and hugs and movies. The Dear Daddy always spends some time with each of them before they get their final tuck-in for the night. He was coming out of spending time with them when for some reason I fell apart.

We'd passed in the hall and I was fine, but when he reached for me I fell into his arms sobbing. Maybe I was over tired from our long day. I was certainly hormonal. Maybe it was the renewed tenderness between us. Maybe it was that my body just felt so awful all the time. Maybe it was simply that I was worn out from worrying and feeling constant dread. Maybe it was all of that. But we sat, we held each other, I sobbed and he listened. He stroked my back while I spilled my fears. He retrieved Kleenex for me when snot threatened to take over. He got a basin for me when I nearly brought up my lunch. He got me water. He'd heard me before, but I think he really understood exactly what I'd meant when I'd said that I also felt that I'd had no choice but to keep the baby. I also said that it was wearing me down to feel torn between the two of them. He held me and rocked me while I described the tormented feelings I'd been having, the fear that I wouldn't bond with the baby, the absolute terror that he would have birth defects requiring surgery. That we might still lose him yet. He listened to all of it.

Later when we were cleaning up the dinner mess he put his arms around me and swayed with me with his face in my hair. "How are we going to get through all of this?" I said we'd have to take it as it came. We stood that way for a long time. He said "we."

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