...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, February 3, 2011

Sweet Lois Has Her Wings


This little one and her family have fought so hard, but Lois left this earth for Heaven this morning at home in her sleep. Please visit her family here and lend some words of comfort.

My heart breaks for her family. Selfishly, I am scared silly for Jack. As well as all the other babies and their families that I've come to know and truly love through the Down syndrome community. I'm saying special prayers for all of us tonight. We are a family now, connected though an extra chromosome. When one of us hurts or loses one of our babies, we all bleed. Please pray for the family who are missing their little Butter Bean.

I know My Beloved will ask why I'm sad. And I won't tell him. Because he will just ask gently, "Baby, why do you torture yourself? Why do you read these things? It kills you every time." And when I finally do tell him he will say, "Stop reading about these things. It tears you up thinking about it. It's not going to happen to our baby. It won't. It won't!" But that won't lend comfort. And I know why. Because Lois was one of ours. One of our own. And I'm scared to death that one day it will be My Sweet Jack's pictures plastered all over the world wide web asking for prayers for him. I am scared. Terrified. More so than when we got Jack's prenatal diagnosis. But I'm also thanking God tonight for my Ds community. My Ds family. And for all of our babies with Ds.

3 comments:

Jenee said...

Tracy, I couldn't have said it better myself. We are all family, and we've never met. The mood has been sad here in West Michigan, my heart breaking for a sweet girl and her family that I had never actually met. It's crazy to others, those who are not apart of our T21 family...Lois will be sadly missed. My heart is breaking for Catherine.

I'm hugging Kaitlyn and all my munchkins just a little tighter tonight!

Tracy said...

I felt selfish talking about my fears in light of their very real heartbreak...but I think we must not be the only family who quietly has this same fear. Hugging all of mine tighter too.

Pam said...

It just breaks my heart about Lois. What a precious little angel....I am praying for her family.