...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, April 27, 2010

Princess & Her Puppy

All Jack has to do is sigh in his sleep and Princess must complete a full inspection.
"Don't worry Mom, he's fine. I'm on the job!"
Post Script: Not to worry! Both human parents were just inches away!

The Oldest Littles and The Girls

This picture was taken in May of 2008. It is still one of my very favorites, and quite a testimony to the mentality of the Deadly Pit Bull! Sophie is the tri-color with the big slobbery smile and you've already seen pictures of Princess with her puppy, Jack! They look so ferocious and the kids are clearly terrified.

Pit Bulls seem to have an uncanny ability to sense ill intent in a person. We've been approached many times out on our walks by people and children wanting to pet our dogs. They are always happy and tail wagging and wanting to be pet and scratched, jumping all over each other for the attention of the new comer. One day in the park we were approached by a shifty looking guy, dirty and skinny and twitchy, with scabs on his face, and The Girls were instantly on alert. The big scary looking one, Sophie, immediately took up her post behind my legs...you know in case we were flanked! Seeing how Princess and Bleu (Our BIG male) were instantly tense, I told the guy not to come any closer. When I said it again and he still kept coming, Princess went and sat down between us and him. When the guy tried to go around Princess she repositioned herself between him and us and I purposely let go of Bleu's lead and he took up his post between us and him and issued a warning chuff. I am so glad we brought him to the park that day! I said "They don't like you. You should leave." He wanted to ask questions! Judging from the specific questions he asked, (Were they fixed? How old are they? Were they related, etc, etc) I thought maybe he was thinking of swiping our dogs to either breed or fight them. Yeah - good luck with that! Let me know how that works out for ya! Sophie was emboldened by her siblings to come out of hiding and stare him down. I didn't answer any of his questions, and said instead, "They really don't like you. I can probably hold two of them off, but not all three." He finally decided to leave, seeing as how only Sophie was close enough for me to grab and I habitually carry a baseball bat when out for walks. Once the guy was gone for good, all three pups went back to chasing each other and chewing on each other and having a frolicking good time chasing pine cones!

PT Tuesday

The big news today is that William transferred a toy from one hand to the other! You go, Willie! To be honest, I cannot recall when either of the Two Oldests did this, or if I was even aware that they'd done it. It just wasn't on my radar to pay attention to those minuscule little achievements that are so major and happy making when Jack does them. If I had the energy I would spend some time feeling guilty about the fact that I don't know this. But I don't have it, so I won't do it! And really, knowing how I was back then, it may very well be written in their daily baby journals somewhere. I keep spying that box labelled in bold black Sharpie sitting there within reach on a shelf every time I go into the garage "KIDS JOURNALS." I am sorely tempted to get it out and take a trip down memory lane. The problem is that I don't have the time right now, and if I do get it out, then it will wind up somewhere else and I won't remember where. No, better to let that dusty box lie a few more months until life is quieter. At least I will know where to find it! Anyway, the point being, Willie transferred a toy from one hand to the other and it made me so, so very happy! It was a high that lasted for hours, over something so simple! And you have to know that I bragged about it to every one I spoke to either in person or on the phone!

The other news is that when Willie is lifted by his arms, he no longer has "complete head lag." Yep, he brings his head along with him! In the reverse action, when he's being lowered by his arms, he keeps his head up and over his shoulders instead of the top of his head being the first thing to meet the floor like it was just a month ago!

In other news, he has been eating the Enfamil Pro-Sobee for a week now, and while he is still a little more prone to spit up, his little bowels have figured out their purpose in life and he is not constipated anymore. His poopies are soft and mushy now like they should have been all along. He still curls up into a C shape and gets all red in the face when he poops, but that's just typical baby stuff!

And in other other news, I guess I'm ready to pack up the breast pump. It's been at least a week since I have pumped. It's just not happening. Once the factory shut down at four months no amount of herbs, guzzling water, and pumping every two hours was going to get it back. I know - I tried! But still, I am having trouble bidding adieu to this idea of breast feeding, or at least lacking that, giving him pumped breast milk. So I am trying to focus on what went right instead. First off and most significantly, I got to have another baby. We got to have those three days of semi-successful actual nursing from the breast. I was able to provide him with breast milk for four whole solid months. He is healthy and thriving and gaining weight. So why is this monolith of a pump still sitting here? I don't know. Maybe today is the day to pack it away. Maybe I can sell it on e-bay or Craig's list.

Sunday, April 25, 2010

Crabby-Snax

Jack Snack has had his crabby pants on lately. We've had to change formula over these past two days and the transition isn't making his tummy happy. I've been mixing the old formula with the new, slowly increasing the new and reducing the old. I've already noticed that his rope like poopies are softer, but his tummy is still grumbly. I do believe he is spitting up more now too. Not a lot, just more. Right now he's having a snooze on the couch on his tummy...right where I can see him. Which for me begs the question, How did our mothers sleep while we were on our tummies? If I can't see his back rise and fall, I have to go listen for his breath and touch him to make sure he's warm and well. Any trip to the bathroom is a well thought out mad dash! It's making me nuts that he's on his tummy asleep, but it does seem to be moving the gas along.Since my sunny little boy has been a storm cloud for much of the day, unless being held, here are a few pictures of how we've spent our day.

First we had a trip through the car wash. He didn't object, but he also was not his animated kicking and wiggling little self no matter how much I coaxed. He was happy to just chew on his hands.

He didn't do any splashing and hardly any cooing at all. He was happy to have the water splashed over and around him, but he wasn't the happy little elf I've come to expect in the bathtub. Poor baby. Next we tried a snuggle with his big sister.
I can see that he doesn't feel real spiffy. Poor Ducky. For the most part I wound up holding him for much of the day. I'm glad he's finally having a comfortable, restful sleep, but right now I just want him to wake up so I can flip him over!

Saturday, April 24, 2010

Playing With the Other Mommy!

Willie loves to play with The Other Mommy!
All babies do!
Because she is just so much fun!
She gobbles up his cheeks!
And she lets him have a gobble of hers!
Yep! Willie loves The Other Mommy!

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!

Thursday, April 22, 2010

"Oh, Down's Kids Are Soooo Happy"

For every one out there who thinks it's okay to call people by their chromosomal make-up instead speaking of them, or God forbid to them, like people, and to generalize them on top of that, for every time I've heard, "Oh those kids are always so happy!" or "Down syndrome babies never cry!" or "They've always got a smile on their faces!" and the best one, "They're never unhappy, ever!" To them I offer this:Will is a baby, not a chromosomal analysis. He's not a disease, a disorder or a diagnosis. And like any baby, he cries when he has a tummy ache, gets hungry, or gets scared or too hot or too cold. Some day he will cry when he feels sadness, like any other person, although I hope to stave that off for a while yet.

Watch Him Go! 360* Rotation!

This entire circuit takes less than 15 minutes. He may not be crawling yet, but he certainly is mobile!






Tuesday, April 20, 2010

Gotcha!

Willie is up for some Grabber Practice!Hmmm...this requires some skill...He's planning his stealthy approach...It was going to be an all out attack...until he noticed that The Squid was watching him! Almost..."I've got ya now!""Now if I could just get it to my mouth...Mommy saves the day by adding links. "Thanks Mom!""Oh...I got this one too!"No one is safe from the power of The Grabbers!Mmmmmm..."Now I'll taste this one!"It's an elbow assist! Two points!"Ahhh...the sweet taste of success! Tastes like chicken!"Willie is almost 23 weeks, errr 5 months and 1 week. He is finally able to open his fingers to grab at what he's aiming for, rather than just batting at them! He's been able to get soft fabric things into his mouth, as well as fingers and his Big Sister's hair, but now he can get toys into his slobbery little mouth! I took over 60 pictures while he played, but I have yet to find one where his eyes are open - danged flash setting on my camera has a split personality - but every time he got the toys swinging in all directions his eyes got really wide and he seemed quite proud of himself!

Monday, April 19, 2010

Yep, He's a Hottie!

Purely for experimental purposes, you know, so I could collect data...I ran Jax with the 'crack-snacks' and 'creases-pieces' a hot bath. Not warm. Hot. Take a look at what happened...the last pic is the money shot!
















Jax lingered long in the bath getting his newly aquired fatty rolls de-crispied and de-crunchied and The Girlie shot 54 pictures of our latest feat...and not a holler among 'em! Aren'tcha glad I only loaded 15 pics?