...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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Tuesday, June 21, 2011

Growing Up

Today my little girl hit a major developmental milestone, but she forbade me telling anyone. And I promised that I would not. So I can't. So don't ask. Because I cannot tell you. Period.

My cell rang in the late morning. She'd snuck the phone into her bedroom, away from the nurse and the sitter. Oh, my heart was pounding. I'm sure the ring wasn't any different than it's ever been, but even before I saw where the call originated, even before the first tentative "Mom?" I was bracing myself for the words that I knew would come. And they did. I swear I had at least a few heart palpitations. I pulled over to the curb and directed her in the step-by-step of what to do. She responded by snapping my head off. I said I'd be home within the hour and made it there in 45 minutes. I wanted to make sure she was not having any discomfort, but even though we were sequestered in the bathroom with the water running in the sink, every privately and discreetly whispered inquiry was met with shortening the stub of my neck where my head used to sit. Dang! I can't wait for next month!

In the evening she timidly asked "Mom. Do I have to wear it to bed?" All timidity was instantly gone when I replied "Yes, sweetheart." You'd have thought I'd strangled her favorite pet and served it to it for dinner with a demi-glaze of apricot sauce! Clearly, it is entirely my fault that she is, in her own desperately quiet words, "Suddenly...I'm no longer normal."

I'd hoped this event would take place outside of school hours. Wish granted. It causes me great pain that she is so very adamantly refusing to discuss any little detail. She gets infuriated when ever I try to give her direction or tips. So, I made a list, sent her brother outside with a Popsicle and tackled it all at once in one fell swoop. There are things she needs to know, like, yes, you have to wear it to bed. And, you need to wrap it up before you put it in the garbage. Stuff like how to tell when it's on it's way, what to look for, how to alleviate the discomfort. The angrier she got, the calmer I got. I finally said that I wasn't sure why she was so angry with me, that I just wanted to make she she knew what to do and how to do it. That's when the tears came and she whispered so, so very quietly, "It's just that...suddenly...I'm no longer normal." I wanted to scoop her onto my lap and rock her like a baby. Instead, while I had her attention minus the glares and daggers, I assured her matter-of-factly that it was indeed perfectly normal and that all of her friends would be experiencing the same things very soon if not already.

So, the less said, the better. I'll wait for her to ask what she wants to know. And then I found the pile of laundry and the comforter that looked like a small farm animal had been slaughtered on it...four days later...balled up in a corner of her closet. Thank goodness for ordinary old household hydrogen peroxide!

4 comments:

Becca said...

Oh, gosh, dreading that day here... But I remember that day when I was 12 *vividly.*

Csunshinegirl said...

Well told story. Poor thing. It is a ROUGH transition I agree with your daughter. Necessary, but rough.

Elizabeth said...

I was blessed to be there the moment your girlie took her first breath, and is so hard to grasp that this day has come! Time flies by oh so quickly, and with it, so many changes. Do not fret my friend, the girlie knows you will always be in her corner with love and answers. She will come to you and ask once the changes wash away into mundane monthly appointments. ;-)

Tracy said...

Thanks Bits,
I'd much rather think about the night she was born. What a day THAT was, with one taking her first breaths and one nearly taking her last. Glad you were there for that...you probably saved my life!