...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, December 10, 2010

Attitude

So...tonight The Dearest and I were all trying to get The Littles out the door to go pick out our Christmas tree. On any given day and for any given event, even just to go to the danged mailbox forcryingoutloud, this is a process. You guys go get your shoes and socks on. "Me?" from both of The Olders. Both of you, go get your shoes and socks on! "You know Mom," from The Middle, "We've had this discussion before. That is not a correct statement. The directive really should be to get our socks and shoes on. Because you have to put the socks on first." Yeah, yeah, you've said to me about 52,000 times now. If I didn't say socks last, you might forget and then you'd have to start all over. Either way, go get them on. And both of you need to go to the bathroom. "Me?" Again from both of The Olders. Both of you! Go pee! "But she's in the bathroom already," from The Middle. Well, either wait 'til she gets out or go use our bathroom. "But I don't like your bathroom." Then wait until your sister gets out and use your own bathroom. Either way you have to go pee before we leave. "You know Mom. It would have been really handy and time saving if God had made us without the need to go to the bathroom. And just think of the money we'd save on toilet paper." So you've said honey, but if it wasn't needing to pee it would be needing to do some other thing. "Does he have to come with us?" from The Girlie. Yes, he does. "Then do I have to go?" from The Girlie. Yes, you do. "It's just...well...he bugs me." So you've told me, go get your shoes and socks on. "Mom!" from The Middle, "I just told you, it's supposed to be socks and shoes!" And yet, I still say shoes and socks. I'm old and set in my ways. Go get yours on! And this is what we go through countless times in a week. Only tonight, The Olders didn't need to be harassed, harangued or harried to get out the door. We were getting that most venerated symbol of the Christmas season, The Griswold Family Christmas Tree, and they were all lined up, spit shined and ready to go in record speed. It was Jack who decided to throw the monkey wrench into the works. This came on the heels of a few days ago when The Dear Daddy was laying on the floor, tapping Jack's piano for him. After a few taps, Jack swiped The Dear Daddy's hand away and went at it himself. Deciding that it may have just been a fluke, The Beloved tried again to tap a few notes...Jack grabbed his shirt sleeve and flung his hand away. He flung it away! Pretty much not a fluke! He wanted to do it himself, thank you! And for about the last few weeks, if the bottle is not produced and in his mouth within a nanosecond of the gas drops being given, Jack pitches an outright fit, convinced that he will in fact starve to death any second. Since turning one, he's developed a knack for throwing a myriad of little fits, for a myriad of reasons.

So back to tonight. It's cold here. It's night time. It's windy. We're going to be outdoors. At night in the cold wind. Jack has no hair. So I put a knit cap on his fuzzy little head. And he pulled it off with a big grin. He's been trying to turn this hat thing into a game he's determined to win for about two weeks now. So, I put it back on his head and said "No!" and gave him the sign for no, just for good measure. And off it comes again. And the big grin again. And while he's sitting there all strapped into his protective car seat, we proceed to repeat this process a good ten more times, because I want to protect his head and ears from the chill and wind. The Dear Daddy is starting to glaze over and The Olders are grousing at the door.

Right about the dozen-th (Is that a word?) time he pulled the hat off, I smacked his darling little hand. Said and signed "NO!" Raised eyebrows from The Dear Daddy. Dead s-i-l-e-n-c-e from the front door. Questioning look from Jack. By the time we've repeated this new process about four times, Jack decides it isn't fun and gives a pissed off cry and the pouty lip and pulled the hat off of his head again! So I smacked his hand and put the hat back on, again! So, fast forward about ten more times and Jack is now patting the hat, giving me the pouty lip and then starts his pissed off cry as he's pulling it off again! Lather-rinse-repeat. By the time he's decided to just pat the hat and give me the pouty lip, but not pull the hat off, The Beloved finally speaks up in a disapproving tone and says, "That might be a little much for him." For him. So I ask, Would it be a little much for him if he didn't have Down syndrome? "No." says he. And Jack took advantage of the opportunity to pull the hat off again. Lather-rinse-repeat. Say and sign NO! smack the hand, put the hat back on. Jack cries bitter angry tears for about 2.5 seconds. But he left the hat on! And we finally get out the door and get everyone buckled and harnessed in and off we go.

Once we arrive at the tree lot, I flip Jack's car seat and get him out and put the danged hat back on. I knew he'd pull it off once we were in the car, but once we're out of the cold and wind it doesn't really matter all that much, and what am I going to do about it from the driver's seat anyway? And we've been doing this fun little game for about two weeks now, so I knew the hat would be off. I got him bundled in a blanket in my arms and off we went. The lights, music and smell of popcorn from the tree lot was a sufficient distraction that he didn't pull the hat off. He was however, trying to see anything and everything all at once, and that fun little backward C maneuver he does had me doing double duty to keep him from flying right out of my arms. I flipped him around to face forward and we started picking out our tree while The Olders ran amok, excitedly shouting for us to come see first this tree, then that one. The Middle wanted to buy 12+ foot tree he was craning his neck to stare up at! He was so excited to kick off Christmas! Jack's little head was turning every which way trying to take it all in. The tree lot guy saw me replace the hat about 60 times just because Jack's head moving against my shoulder kept dislodging it. And holding an excited wiggly baby with one arm and trying to replace a stray hat with one free hand is a trick! The tree lot guy offered that we go stand over at the blazing pot bellied stove merrily crackling away while he passed out candy canes to The Olders. I assured him we were fine, that the baby was just so taken with the bright twinkling lights, he kept rubbing the hat off against my shoulder. The Beloved took over Jack and I went to round up The Olders. We found a really good tree and while I paid the tree lot guy I was watching The Dear Daddy have quite a go of keeping Mister Wiggle Boy from falling out of his arms and onto his head! He had him facing toward his chest, which had Jack doing the backward C back arching thing. Toss in the now stretched out hat that kept slipping and a quilt designed to keep The Little Bean warm, and The Dear Daddy suddenly needed six extra arms! I used the excuse of rewrapping Jack's quilt around him to face him forward in The Dear Daddy's arms. Much better.

By this time, the tree lot helper had started trimming the bottom of the tree and would soon start nailing a sturdy plastic bucket and stand to it before he was ready to heft it over to the van. The Beloved and I exchanged a glance while he fished some money out of his pocket, trying to contain Jack in all his excitement. Do you want me to take him? "No. Give this to the guy when he's done, for a tip. Let him know he's appreciated." He was a young man, probably in his early twenties, with an over sized head, well over 6 feet tall with a broad chest and large arms, and clearly had some sort of developmental disability. The tree lot guy had spoken quietly and kindly but slowly to him, telling him what needed to be done. He kept his eyes down, listening, but gave one quick nod and went about his work with such extreme care that both of The Olders had gathered round in revered silence to watch him work. Were these two attentive little well behaved still-standing children really my little hoodlums who had minutes before run shouting and screaming willy-nilly through the tree lot? The Girlie was so delighted to hand him the tip and say "Thank you! Merry Christmas!" Jack was giving his Daddy a run for his money, and I noticed that the hat was now in his grubby little grabbers and being stuffed into his mouth. His little legs were drumming to the beat of the Christmas carol and his whole torso was swaying back and forth to the music. The protective, warmth providing quilt was now wadded up under The Dear Daddy's arm. Jack was in a blanket sleeper and could not have cared less that his now bright pink cheeks were getting chapped and his thin little hairs were dancing around his head in the gusts of wind. The Beloved saw me taking in the scene and just shook his head in quiet defeat.

As we headed to the car, Jack let out a screech that would make wolves howl. I turned to see his body first go rigid and all four limbs jerking and then his little body flailing and bouncing up and down against The Beloved's chest. His face was red and crinkled up in the kind of fit he only throws, to a much lesser degree, when Princess walks away from him. Here's a milestone for ya! He was throwing his first tantrum! "Stop that right now, young man! I know you don't want to leave, but it's time to go home." I took Jack while The Beloved retrieved his hat from where he'd dropped it in the dirt and started getting him buckled into his seat. The tantrum was short lived, and he was now just sporting the pouty lip while tears glistened on his eyelashes. The Beloved handed me the hat to put back on his head and Jack reached up to pull it off. "No!" from The Dear Daddy. Heart broken whimpering from Jack. He clearly had not wanted to leave the bright lights of the Christmas tree lot. He'd never heard his Daddy speak sternly to him before. I think his monumental sized first tantrum was broken by that fact alone. Poor Jack. Poor pouty lipped little Jack. It was a big night for him.

Once home, the tree was set up in the front room, with water in the bucket to await decorating in the morning. The Olders had gone to their rooms to get jammied and teeth brushed and start the bickering process of picking out a movie. Jack was settling in with a bottle. The Beloved had shucked his work boots and was getting comfy on the couch, relaxing after his long day at work, all tasks for the day completed. He looked over at Jack happily having a bottle in my arms, his earlier heart break now long forgotten, and asked rather mournfully, "What happened to our sweet little baby? He was a real butt head tonight!" I was sympathetic in saying It's just another developmental milestone. It's going to be like this for a while. Poor Dear Daddy.

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