...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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Wednesday, April 27, 2011

She's A Keeper!

So when I get home tonight, Katee, our nurse, asked me if I'd gotten Will's sedated ABR appointment yet. I tell her no and remind her that the audiologist said it would take 4-6weeks before we get our appointment notice in the mail. So she asks, if tubes are recommended, would I get them put in. I said yes, that it was extremely important that he be able to hear well in order to speak well, and then I mimicked someone who cannot hear or speak well. I said If he can't even say his name clearly, who is ever going to want to promote him any higher than the grocery bagger* or the cart boy* using the jerky rapid cadence and softened consonants of our older disabled citizens who did not have the benefit of early intervention and speech therapy. And her eyes welled up and spilled over. She was stricken. She said it really hurt her that society does not realize the value of children with Down syndrome. That it angered her that so many wonderful people were denied opportunity without ever being offered the chance to try. That she would love to parent a child with Down syndrome. She's certainly a keeper.

Katee's story is not for me to tell. I will invite her to my blog to tell it in her own words if she would like. What I can tell you is that her experience in being Willie's nurse is different than with her previous two charges with Down syndrome. Different in that Willie has full run of the house and does not spend his entire day and night in his bedroom. Different in that Willie's family celebrates him and marvels at his being. Different in that Willie is given every opportunity for therapy, to learn, to grow, to be. Different in that Willie will grow up with expectations placed on him. To go to school. To attend college if he chooses. To get a job. To marry if someone steals his heart. To live as independently as he is capable of. To be a productive adult. To be happy. To make his own choices. To live. Katee is a woman half my age. Her other two charges were not in years gone by, back in the dark ages when parents hid their imperfect children away. Nope. These are very recent events. As recent as this past March. Modern day children in modern day families. Secluded in their rooms. Not provided with therapies. Fed, clothed and sheltered, but hidden. Denied. I understand her tears, and I hurt for her having seen those things, but I thank my God in Heaven every day that she's come to us.

*There is certainly nothing wrong in being a cart boy or a grocery bagger, but while the stars are ours to reach for, I will hold Willie as high as possible to reach for whatever his heart desires.


Csunshinegirl said...

WOW! Sounds like it would be a painful story. So sad!!!

Tracy said...

Katee accepted a guest post! Go see "My Happy Place"