...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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Sunday, April 17, 2011

Scratching, Pinching & Biting, Oh Dear!

Clearly, we need some help. Okay...I need the help, because as both of Jack's nurses assure me, this neck pinching, hair pulling, ear scratching, jawline/chin biting and digging of his pointy little chin into the soft flashy part of one's face? Reserved for me alone. When I scoop Jack up out of bed in the morning to a lesser degree, or when I come home from work to a much a greater exponential degree, his little face lights up, his grin spreads across his face and his arms scoop around my neck while he burrows into me. And seconds later one hand is pinching my neck, trying to gain leverage to climb higher in my arms, and the other hand and often both are grabbing fistfuls of the finer hairs at the back of my head to pull himself higher, the pain of which is only matched by his forceful grinding of his chin into my cheeks. All the while he makes a breathy and excited "Ooooooh, oooooh, ooooooh!" sound. Yes, he clearly loves me to pieces. Yes, he misses me while he sleeps or when I'm gone. Yes, he very clearly is happy to see me and knows who I am. But it hurts. It hurts bad. I see stars. I used to be able to extricate myself fairly quickly. Lately though, more often than not, I need help! I can only grab one hand and keep from dropping him...or more likely, suspending him like a pendulum from my scalp and flesh! By the time I wrangle one hand free, I can hear the hairs tangled in his other hand popping from my scalp by their roots on their way to the floor. When I try to free that hand from my recently cropped mane, the first hand either grabs neck skin or another batch of hair! By this time Jack is singing out a chorus of "Eeeeeee! Eeeeee! Eeeee!" and exuberantly bouncing up and down in my now tenuous grip. This is about the time he sinks those little fang like bottom teeth into my jaw or chin. Those top teeth are real charmers, too! So please, help me out here! I've tried the disapproving scowl. He thinks it's funny. I've tried putting him down-he screams like his little heart is breaking into pieces. I've tried - yes I admit it - slapping his hand when he does this at nap time. That just ticks him off. I've done the nice, soft, gentle mantra for so long it isn't funny. By the way, he gets nice, soft and gentle for about ten seconds then his little eyes gleam and he digs into whatever flesh is handy with redoubled efforts. Help me. Please. I adore that he's so happy to me, but it's becoming a very painful and worry fraught event to come home! COMMENT, Please!

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