...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, October 6, 2010

Are You Kidding Me?

While people with Down syndrome are at a much lesser risk for developing solid mass cancerous tumors, mothers who have a baby with Down syndrome are thought to be at a 23% greater risk for developing breast cancer. Where does that leave me with a strong maternal history of breast cancer already? Up the creek...

This study says that women under 50 but over 30 with their first pregnancies are at an even higher risk. And the fact that I had a 46-chromosomed baby before my extra-chromosomed baby only ups my risk. What about two 46-chromosomed babies before the extra? Does that up the ante again? Is it exponential?

Has anyone else heard about this? Of course not...we're too busy researching and therapy-ing our babies, being super mom to eat a decent meal or shower in a timely fashion to worry about ourselves!

So what am I going to do about this? Ummmm...pretty much nothing. The damage I've done to my body over the years cannot be undone. My pregnancies had their own magic potion to guard against ills. We have 3 differently-abled children. With that being said, I will probably never be allowed to die. Or retire. Ever. So there!


Ashley said...

I don't think I believe this. Me and my mom were talking about this because I've heard it before on Facebook, and I don't think that it is possible that you having a baby with Down syndrome has an impact on your body.

Tracy said...

According to the articles I read, it's the increase in hcg associated with the later trimester in Down syndrome pregnancies that puts us at a greater risk. Still...seems like someone would have noticed this trend sooner if it's true...I'm not entirely sure that I believe it either. I'm not going to lose sleep over it!

Anonymous said...

Sorry... I'm confused. Did you have 2 miscarriages of babies with Down syndrome? Didnt really catch the reference at the end...

Tracy said...

Dear Anonymous,
We have two older children with autism, and one baby with Down syndrome. We did lose our Hannah in utero, probably due to chromosomal abnormalities. Also, one early miscarriage many, many moons ago after using a toxic pesticide that has since been yanked from the market for that reason. The comment at the end, about having three differently abled children counts all three of my blessings...and that I will will simply never be able to die or retire because they might still need me! Although, the goal is to raise them to independence!

Juicer said...

I am amazed by your positive outlook. It can be such a difficult road for any family to go down, having one special blessing, but 3? God has given you a strength that few others possess.