...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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Saturday, July 16, 2011

Auntie Bits

Please pray for my dear friend Bits. She and one of her children have been hit with that wrench and hit really, really hard. Hard times come and hard times go. There is usually a reasonable hope for good times to return. When there is not that hope, there is despair. It is truly desperate times when it involves our children. Then hard times become suffering and torment, and no matter how bad things have been, that damned wrench just keeps coming back to hit them again and again, leaving bigger bruises, deeper wounds, injuries that will not heal. That cannot heal. That damned wrench has claimed far more than it's pound of flesh and I hate knowing that it still flies, bloodied with their pain, to hurt them again and again many more times before this is over. Please pray with all of your might for my friend and her child.

Keep your head above water Bits. You will get through this.

Click on the Music Player to hear this beautiful song*.

Did you ever picture your life like this?
No shooting star to grant your wish.
Are you everything you hoped you'd be...
or caught somewhere in between?
You dropped your nickels down a wishing well
and prayed for luck to cast it's spell,
to bring you closer to your dreams,
that always seem just out of reach.
You pray to God the moment when
you feel the current pull you in.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

Have you ever felt like giving in?
Tried for hours but just can't win?
Tell yourself you're not good enough?
The struggle alone is just too much.
No one's there to hear you scream.
Gasp for air but just can't breath.
Did you ever think you'd see the day
when you'd watch your life get washed away?
You pray to God the moment when
you feel the current pull you in.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

Did it ever hurt so bad
that the thought of feeling lost
would never end?
Well you will think again.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

~Theory of a Deadman
Head Above Water
The Truth Is...Album

*Can anyone tell me how to make the music play automatically?
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2 comments:

Elizabeth said...

You are one of those friends that comes along once in a lifetime. I am so blessed to have you in my life. Only you would know what to do, and how to comfort me, and bring me a shred of peace in your very own creative way. You know how I love music, it its the medium that carries our thoigjts and feelings to Heaven. Such a perfect song, oh how well you know me!! Prayers are the only thing that can soothe the gaping wound in my soul...and a treasured friend that will always walk with me through the tears and laughter that this life brings. Thank-You my friend, for all that you do, for knowing me so well, and this beautiful post. You made my day, and hoping all the prayers will come to fruition. You are my forever friend~ Bits

July 16, 2011 at 6:38 PM
Tracy said...

I love you dearly, my friend. We've been there for each other for far, far too many tears...but so much laughter as well. We will weather this storm, too.

July 16, 2011 at 8:53 PM

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