...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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Friday, April 23, 2010

Ooooops!

I was pulling into the huge horrid lot at Costco today. I was waiting behind a car about midway down the isle that took forever. Finally, the driver plunked the trunk shut, got into the car, started it, I saw the lights for reverse, and then I didn't. She put the car back into park, shut it off and got back out. Waved at me as she walked away. Dang. Then I spotted a premium slot just being backed out of right in front! Right in front. I couldn't get closer if I parked on the covered patio! If I could get to it before someone else. Yes! I did it! I was there! But there was a guy standing in front of it waiting for someone. This is where the Ooooops moment begins. The guy was waiting, for another guy pushing a huge heavy cart. A roundish guy with up-tilted eyes, a round face, uneven small teeth revealed to me when he smiled very broadly at me and waved because I'd waited for him to move before pulling into the slot. And this is where I am guilty of stereotyping. The guy who had been waiting looked perfectly able bodied. He had a brisk vibrant step, yet the other guy with the broad smile was pushing the laden cart. Of course. He was the cart boy. He has Down syndrome. Or so I thought. I should have just left it at that. But, there were no shopping carts and I wound up walking all the way back to where I'd originally tried to park just to find a cart. And by the time I got there, the guy with the big broad smile was coming toward me to return a cart. And there was that smile. The one that is so telling. The one that says, "I sport an extra chromosome." The badge-of-honor smile that no one else can or has a right to wear. There is was. Proof! So I asked him, "Excuse me, but do you have Down syndrome?" I fully expected him to say yes and then I'd smile and say my baby does too and all would be happy. But instead I heard, in a rather deep and surprised voice, "Why no ma'am, I do not." Oh. Okay then. I'm sorry to have bothered you. And I high tailed it out of there feeling like a complete idiot. He had the look. He had the facial features. He had an overweight, round body. He was smiling and pleasant. He was doing the menial work for others. So I put him in a box and labeled it. Shame on me. How can I dare to hope that others will give my son a fair shake in life when I myself slide so easily, so willingly, into the stereotype of Down syndrome as everyone else does? And just to set the record straight, I am completely aware of the double standard here in my use of the word "idiot." It too was once used as a medical term every bit as much as the R word. The difference is that anyone can be an idiot or act like one or feel like one or be idiotic. The word retard is always used as a barb, an insult, a hurtful word, and is always aimed at or used to describe a certain group of people who society sees as deficient, less than, defective. Yes, anyone can be an idiot. Even me. It's nothing special. It takes a remarkable person indeed to have Down syndrome, to wear it proudly in their faces, their smiles, their zest for life! I should be so blessed. Oh wait - I am! I have William!You go, Jack!
Wear it loud...
...say it proud!
I will always be in awe of you! Even if your mother does take pictures of you wearing a dirty collared onesie!

1 comment:

To Love Endlessly said...

Oh man, I would've run outta there too! And you weren't asking to be rude, you were probably just asking because that's what a lot of us do if they see someone that has DS. You try to strike up a conversation and learn a little bit more about this new world. Ahh well is probably all he thought. ;-) Your lil man is adorable in these shots!