...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




Lilypie Second Birthday tickers
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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Sunday, September 26, 2010

Conversations With the Beloved

Upon arriving home from work the other night; setting: living room, The Beloved stands behind my shoulder while reaching around to rub Willie's head while I hold him in my arms

TB: We love him, don't we?
ME: Yes.
TB: Are you glad we had him?
ME: Yes. Definitely. (Pause while Willie giggles at his Daddy) Are you?
TB: Yeah. (Pause) I'm glad we had him. He's a good baby! He's the best baby!
(And The Beloved lifts Willie over my head and goes off to play.)

Saturday morning; setting: living room, Willie is playing on the floor, The Beloved is on the couch, I'm in my glider

TB: Man! He's getting big! Look at how huge he's getting!
ME: He's not that big. He's growing, but he's still really little.
TB: No he's not! He's getting huge! Look at how long he's getting.
ME: He's still in the 1st and 3rd percentiles for height and weight.
TB: So what does that mean?
ME: Same as it did the last time I explained it. 97 male babies the same age weigh more than he does. 99 male babies the same age are longer than he is.
TB: Well, what are their weights? How long are all these other babies? I want all of their measurements before I'll believe you. Who does the measuring? Is it always the same person? And what about the scale? Is it always the same scale? Were they all measured and weighed on the same day? You don't know, do you? You talk a lot of smack but you don't have the facts to back you up! Don't listen to her, Baby Head. Your Mom's talkin' smack about you again.
ME: The only facts are that he's in the 1st and 3rd percentiles.
TB: Statistics can be skewed to show whatever the person taking the statistics wants them to show.
ME: It's not statistics, it's percentiles. You know, as in per cent? And how is Willie's growth suddenly a conspiracy to skew the facts?
TB: How should I know? Who knows what motivates these experts?
ME: Okay. Let's try this. What size does the tag say that outfit is?
TB: (Fumbling to flip Willie over and read the tag without actually picking Willie up or getting down onto the floor) Looks like...3-6 months.
ME: And how old is he?
TB: Um...10 months? Is that right? Yeah, 10 months.
ME: 10 1/2. Most babies are well into 12 month size clothing at 6 months.
TB: (Scooping Willie up from the floor) Don't listen to her, Baby Head. I don't believe any of that crap she's saying! C'mon Baby Head. Let's go in the bedroom and see if we can find Sponge Bob on TV. You still like Sponge Bob, right?
(And off they go down the hallway.)

On the way home from the DSALA New Families Bar-B-Que; setting: the van
TB: Did you have fun?
ME: Yeah. It was nice to see everyone again and meet new people. Did you have fun?
TB: Yeah. I'm glad we went. Our Baby was funny. I don't think he's going to be as bad off as we were thinking (As he was thinking). A lot of those other babies were sleepy, but Our Baby was ready to go join the party!
ME: What do you mean?
TB: Well, those other babies, they just kinda wanted their Moms while you guys talked, but Our Baby wanted to join in the conversation. He wouldn't shut up! Every time any one new came over to us he got all vocal and animated and wanted them to pick him up! I think he wanted to see if they had brought him any food! Or if they would let him pull their hair!

...and later on the trip home...
TB: So how many times do we get to go to this thing before Baby Head gets kicked out? (This from the guy who refused to go with me last year)
ME: Well, we can go until he turns 3. Then we move to the Reunion Potluck held the next day.
TB: Oh! So he will graduate! Well, he's not even 1 yet, so we can go for three more years! We can still go when he's 2 1/2, right?
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