...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, April 15, 2010

A Couple O' Shout Outs & Stinkerie Stamps!

I'd like to send a couple of shout outs. Because I can! I have learned how to create links! And because I should. These wonderful women have helped me along on my journey so far, and thereby helped my family. They all rock! So, watch me link...

First, I'd like to thank Jenee Ross. She is the first person I contacted by email back when the news was so fresh and raw. All I really remember from the initial email I sent her was, "Can you tell me what I'm supposed to do now?" She wrote back several times, encouraging, answering questions and giving me hope for Will's future. I remember her last line of a particular email saying, "Remember he is a baby. He's just a baby." When I wrote an extended email to family and friends, following up on the fact that so few of them had contacted me once they knew, I tried to address their avoidance and I kept Jenee's words in mind when I wrote, "He is a baby. Our son. He is not a disease, a condition or a tragedy. Please don't avoid me because you don't know what to say to me. I don't know what to say to me either!" After a few weeks I glommed on to another mom and spent the rest of my pregnancy emailing her, but I was soooo happy when I discovered that Jenee was that "first mom" to calm me! Thank you Jenee...I'm forever in your debt! I'm sending the First Ever Stinker Stamp to you! (I just made that up!)

Down Syndrome New Mama recently spent some time on the phone with me showing me how to load pictures of My Littles without anyone being able to lift them! I am not computer competent - I can find the ON button - but she is brilliant! And with 6 Littles of her own, the time she took with me is so appreciated! And now that I've figured out how to link, thanks the Miss K from the ART - (the same Miss K who helped me quickly install Jack's car seat that long ago November day) - I can thank her publicly! Thank you Down Syndrome New Mama! You rock! A Thankful Stinker Stamp to you!

Another shout out to Kelle Hampton of Enjoying the Small Things. Will was just ten weeks old in my arms while I sobbed over her telling story of her Beautiful Nella's birth. If you haven't read it already, this is a must read, but you'd better have a case of Kleenex handy. A full case! A Soggy Stinker Stamp to Kelle!

Another shout out is to CH of The Adventures of Pudge and Zippy, just because these two kids make me so happy! CH writes about them so beautifully that I swear I can hear their laughter and little voices in her words...oh, wait a minute, I can because she so often includes video! I think I may have creeped her out a little with the few emails I've sent her, because she has never written back, but Zip reminds me of Jax, and My Girlie adores Pudge! A Happy Stinker Stamp to CH!

And the last one for now, and probably my biggest is to Beth, wonderful Beth, and her daughter Hannah! Beth is the mom I glommed onto after Jenee. How she has continued to put up with my repetitious questions and sometimes outright ignorance, I will never know. But she has and I am grateful for her Internet friendship and personal phone calls. She is the one who bestowed Jack with the moniker of Snake. When I write to Beth I call him Slither! She is Jack's Virginia Other Mommy, and I'm sending a Slithery Stinker Stamp to her!

Thank you ladies, from the bottoms of all our hearts! You all rock and we wouldn't be in as good a shape without you!

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