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Saturday, April 16, 2016

It's daddy posting...
It's been a long time since I've posted.  In the last few month I've made peace with my God, demons, Death, and myself....sort of. (I say sort of because I still don't like the situation, and I still hate SMA). I know that we all want something, for different reasons, but we are all willing to fight until the end. I respect that. I've found a kind of peace because if this were a real boxing match, and the referee stopped the bout right now, Isaac would be declared the winner by the judges. Isaac's prognosis was 8-9 months. He's now 26 months. Surviving 8 code blues, dodging RSV, the common cold, germs in general... All of that in my mind is a winner. I know that the war will be lost eventually, but the battles that have been won, as a family, over SMA, make us all winners. Another confirmation was the birthday party that we went to. There were 3 SMA type 1 kids there including Isaac. Both of the other kids were much stronger and had much more movement than Isaac. They were all on ventilators but the others were not on oxygen. Isaac is so weak compared to them, but he's still here, he's still alive. He is a fighter!  He is a winner!

This new perspective has given me some peace. This peace has given me more quality time with Isaac. Last week I was holding Isaac on the couch and we started having a fist fight. He laughed so hard and loud every time he punched my nose that Jenna could hear him in the shower. When Jenna came out of the bathroom she had the biggest smile on her face because of how happy Isaac sounded. I haven't seen Jenna smile like that in a long time.
I brought home a kite a few weeks ago. I got it up in the sky and handed off the string to Isaac. It totally blew his mind, seeing the string wrapped around his hand, extending all the way up to the bright red kite in the sky...
A couple of months ago the battery went dead in the Subaru. I went to town, bought a new one, came home and said "Isaac got a new battery. You gotta come help me put it in the car."  The nurse just smiled. I said to her "no seriously, he's my boy and he's got to hand me tools and learn how to do this."  Out in the driveway, with a little wrench in his little hand, he wouldn't take his eyes off the car with the hood open. I explained everything, and he talked back in his little Isaac way.
Isaac and I have been doing more things like this together, these were just three examples that came to mind. I've been able to do these things with Isaac because of help from my saints.
Going to church there seems to be a lot of talk about the saints.  I never really got it. I'm sure the nuns and popes were great people and did great things but I never studied them or knew them. However I want to talk about my saints. The ones I know and the ones that help me.
Jenna. For unending care, even when she is so tired she can't talk coherently. Saint.
Nurse Jessica. So intelligent and caring and loving when it comes to Isaac. Saint.
Richard, Isaac's medical supply rep who called me 90 seconds after the power went out. "Do you have power? How much oxygen do you have? Are all his batteries charged?....." Saint
In the very same minute a woman from the city of Mead called "Did you lose power? Is Isaac okay? Here is the direct line to the firemen if you need anything." Saint.
Nancy and Dave. For more than two years now they bring us home cooked meals every single week. Saints
Of course all the staff and team members at Children's hospital. To many to name but they know who they are. All saints.
Grandma Bonnie and grandma Sharon. They can always calm Isaac down when he is upset. Saints.
Grandpa Roger. He's always got my back. Thanks to him and his gas generator, Isaac had electricity when the power went out. Saint.
The Mead firemen. 18" of snow drifting to 36," no power in town, both highways closed, we called them. "It's not an emergency but we need gas for the generator."  All they said was "Unleaded or diesel? Be there in 30 minutes." Saints, all of them.
My doctors. My PCP, my "shrink," and my concussion specialist. For "knowing" my situation and how hard I'm trying, and how hard they are working to back me up and help in every way they can. Saints.
Mike Grills my lawyer... Saint.

Friends, family, people from town, church, and around the world. People giving money, support, food, love. So many people I can't name them all and frankly I don't even know them all so I can't name them.  Saints.

Isaac, me, and my family are in the best place we could  be because of help from all of my saints.

Now for my song by Disturbed. "The Light"

Like an unsung melody
The truth is waiting there for you to find it
It's not a blight, but a remedy,
A clear reminder of how it began
Deep inside your memory
Turned away as you struggled to find it
You heard the call as you walked away
A voice of calm from within the silence
And for what seemed an eternity
You wait and hoping it would call out again
You heard the shadow beckoning
Then your fears seemed to keep you blinded
You held your guard as you walked away

When you think all is forsaken,
Listen to me now
You need never feel broken again
Sometimes darkness can show you the light

An unforgivable tragedy
The answer isn't where you think you'd find it
Prepare yourself for the reckoning
For when your world seems to crumble again
Don't be afraid, don't turn away
You're the one who can redefine it
Don't let hope become a memory
Let the shadow permeate your mind and
Reveal the thoughts that were tucked away
So that the door can be opened again
Within your darkest memories
Lies the answer if you dare to find it
Don't let hope become a memory

When you think all is forsaken,
Listen to me now
You need never feel broken again
Sometimes darkness can show you the light

Sickening, weakening
Don't let another somber pariah consume your soul
You need strengthening, toughening
It takes an inner dark to rekindle the fire burning in you
Ignite the fire within you

When you think all is forsaken,
Listen to me now
You need never feel broken again
Sometimes darkness can show you the light

Don't ignore, listen to me now
You need never feel broken again
Sometimes darkness
Can show you the light

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