...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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Saturday, April 3, 2010

Bunny Boy

Today The Littles and I took the Bunny Boy to meet The Easter Bunny! We waited in line for about an hour. When we were next to the next in line, The Girlie confesses that she's a little scared to sit by E. Bunny. I tell her she doesn't have to, but it would be for just less than a minute and it would make a nice picture. So she did, with The Boy-O and The New Bunny Boy! And then we snapped a pic of just The Bunny Boy with the Easter Bunny! He wasn't nearly as impressed with all the goings on as I was, but he didn't get upset either! Happy Easter, Bunny!


Then once we were out of the line, but still in hearing of all the other littles still in line, The Middle announces for all to hear, "Mom. That is NOT a retired Easter bunny like you said! I could see a person through the eye holes under that helmet!" Can you guess how popular we suddenly were with all the other mommies and daddies who had also waited for an hour in line with their little darlings? I gave The Middle a little shove forward, a subtle nudge to offer him up with a look that said, "Hey, he's the one who said it, not me!" Okay so I didn't really offer him up to the mob. I did give him a little nudge forward but I was just trying to get the heck out of Dodge before the other parents rioted.

Then we came home to color eggs for the festivities tomorrow. While The Littles still believe in all manner of fairy-tale folk, The Girlie did catch on to one thing. "Mom, Dad isn't going to be home for Easter, is he?" No, I say, he won't be home this year, he's working. "So who's going to hide the eggs?" What? The Easter Bunny, of course. Well, she's not having this. She gives me her best and most ferocious "MOM!" look. I say, Okay, you got me. Mommy and Daddy are really the ones who hide the eggs every year. I'll do it this year. So she thinks for a while. She's not upset that we've been hiding the eggs all along, but neither is she finished chewing this bone yet. "So who always hides the eggs at Grammy and Grandpa's house?" I tell her that Grandpa always snuck out to do it. "Darn it! Then what is the Easter Bunny good for anyway?" With raised eyebrows I regard her with utter astonishment. Well who do you think leaves that basket of goodies for you every Easter morning? Face brightens. Looks happy. Faith restored. Then concern..."Mom, I hope I didn't hurt the Easter Bunny's feelings. Do you think I did?" Tears starting to well...No honey, that bunny is busier than he's ever been right now. It's not like Santa who knows what you're up to all the time. He didn't hear you. Relief, "I'm really sorry," she says. I assured her that all was well. They went on to finish the eggs with a reasonable amount of fun and anticipation.


So The Littles colored eggs while I videotaped. Jack was happily going for a whirl in his swing and could not have cared less about getting his fingers all shades of purple, blue, green... The Boy had to be told about a million times not to throw the eggs into the dye. And to use the spoon to get them out. And to not stick his whole hand in the dye. And no, for the twelfth time, it doesn't taste good. Yes, I'm sure. And he bickered with his sister and accused her of trying to dye her eggs darker than his, prettier than his, faster than his...and I did my best not to launch myself across the table toward The Boy in a Homer Simpson imitation with my hands around his neck to throttle him. Sometimes he is just purely exasperating. Thank God above, by the time Jack is old enough to color eggs, they will be teenagers who are too cool to color eggs.

On to bright idea #3. Equally disastrous. I bought four premade cookies, two bunnies, two eggs, complete with premade frosting and decorations, all in one handy package. Great idea, right? Wrong! The Middle wound up getting frustrated and insisting he couldn't do it. I got frustrated and recommended he just throw them out...I was done! And yes, I did say that...it's all right there on the videotape. The Girlie did manage to produce a bunny shaped blob of yellow frosting with all the candies piled on top. No one had fun with the cookies. No one.

When The Beloved calls later tonight I will relate our day to him. He will say something like "It's just that I know how you build things up in your mind Sparky. You set standards that no family event can ever live up to," from the bedroom scene of Christmas Vacation. He has oft likened me to Clark W. Griswold. I don't know why, but he does. It frustrates me. I have been known to throw bridal showers, several baby showers and a few kids birthday parties right out of the pages of Better Homes and Gardens. Better in fact. I have received thank you notes from guests, for other couples' baby showers I have hosted, for inviting them to such a wonderful affair. Me! Why, oh why, can't I orchestrate a simple evening of coloring eggs and decorating cookies for my own kids without all the screaming and yelling and gnashing of teeth? I don't get it.

One thing odd. A lady ahead of us in line was holding a darling little baby girl. She kept looking at The Littles and smiling. A conversation ensued. She asked how old Jack was. Exactly two weeks older than hers. What did she weigh at birth? 1.5 pounds heavier than Jack. We held them up to each other when I said, Wow, what a difference two weeks can make, but then, little girls should be small and dainty. Six pair of adult eyes, and those of The Girlie turned toward me. "Mom, she's bigger!" Really? I ask. Nods all around from the cute little girls' mom, dad, aunt, friend, grandma and grandpa. And some people who were with other kids but witnessed my insanity all the same. I look at the sweet baby girl. I look at Jack. We hold them both up again. It must be me, I say, He just looks big enough to eat her! I smile sheepishly at the other mom, Really, to me he looks bigger, and she graciously says, "No, she really is bigger," smiling. Wow. I swear that Bunny Boy was way bigger than that sweet little girl. And boy was she pretty! Now I know what Big Blueberry Eyes are! But I digress...at her last appointment she weighed 13 pounds, 14 ounces. Jack weighed 11 pounds and 3 ounces just 4 days ago. How much more proof do I need? Well, there is the fact that for most of the time I sit writing these posts, Jack has been snuggled into my lap at my desk, under my pull out slider for the key board. Usually with one of my legs curled under the other to support his head. He was smaller. I just couldn't see it. Odd. Maybe that's why my little slugger is still wearing newborn clothing?

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