...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, July 9, 2009

Grandma Emmie & Michigan Purple

I may have mentioned or not, but like Mom and Dad, Grandma Emmie is not my Mother. Neither is she The Beloved's Mother. She is one of my very best friends. And a wonderful mother to her own now grown daughter. She was always so wonderful to My Girlie when she was born, and eventually to The Middle when he came along. She was just so much more than the Aunties who were not real Aunts. She was as wonderful and perfect to my Kidlets as my Mother would have been. Like a real Grandma would have been. But she wasn't older enough than I to be my mother. So, she got dubbed Aunt-Grandma. Over the years, I finally shortened it to Grandma M---E----, now Grandma Emmie for the sake of reading flow. And so she has been ever since!

So, the last phone call I had left to make was to my dear friend Grandma Emmie. I told her as simply as I could that The Baby was a boy and he would have Down syndrome. She was quiet for a bit and then asked gently, "Well, what are you going to do?" I told her that we were keeping him. She knew that. She's the one person I'd confided in, that I was sure as soon as I knew I was pregnant that he would have it.

Then she told me about a day she'd had to make up in college years ago. She had to spend an eight hour day at a group home for people with developmental disabilities. She said there were 8 people living there, from kids to young adult, and they all had Down syndrome. She was very encouraging as she described how impressed she'd been with their lives. They went about their normal day doing things normal people do. Making beds, Eating meals. Cleaning up after. Watching TV. Playing games. Talking over lunch. Washing dishes. Doing crafts. Reading books. Being a family. It made me feel better to hear her words because I knew she knew the fears in my heart. It gave me some hope that we'd be alright. "You are a strong person. You can do this. You aren't the first pregnant woman facing this news. There are others out there to help you. You will know what to do when the time comes." Her faith in me somehow gave me a little faith in myself.

I'd already called my on-line friend, Purple Rose, the one I'd confided in way back in March that I suspected I was pregnant, in the wee hours of this morning. She's been my friend-on-the-phone through thick and thin, through more late night work breaks and middle of the night chat fests than I could count. She'd visited with us for two weeks in March the previous year, and we'd been on-line friends since The Middle was just a few days old. I told her I'd gotten the amnio results. "And..." And it's a boy, I said. "Well, I already knew that. What else?" I told her he would have Down syndrome. She was quiet for a beat. I never know if she heard what I said, if she was thinking, or if she was looking for the next address she had to throw a paper to. "Well..." she finally says, "You already knew that, right?" She was encouraging. She said she knew we could do it. She said she was sure he'd be born healthy, to stop "going there!" She knows me too well.

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