June 17, 2009

Hello there - I have a precious quiet moment during the DAY (a real rarity - I usually write my blog once everyone's in bed.) Casey is napping and Cody is having therapy. I am busy planning next week's surgery run-down. Yesterday I met with the anesthesia clinic and went over details. Then Cody was weighed again and he'd lost weight once again. Sigh. Should be a 1-2 night stay in the hospital and he should be 'using' the tube 1 week after surgery.

Whenever we approach surgery my mind drifts to the same places - when I hold him I notice how creamy his skin is...then I try not to think about a surgeon's knife tearing through it. You know, those morose things. I thought today that I want to be sure to get a photo of his little tummy before the surgery so I can capture it when it is still perfect, smooth, and free from a tube protruding out. It's one of the many pictures I will bury so I never have to look at it - but I still need to know it's there. I will put it next to the photos I had taken the week he was diagnosed at 6 months of age when I told the photographer to capture every expression because I was told they'd soon be gone. And the expressions are gone for the most part. But I have the pictures - which I doubt I'll ever take out of the box with the ribbon around it. But like the tummy photo - I need to know they are there. They are all photos of the milestones of Cody's life - times when things were about to change drastically. Pictures are my way to make time stop and to (maybe someday) look back on and remember him as he was once. With no feeding tube. With no muscle biopsy scar. With no Vagus Nerve Stimulator scars on his arms and neck. With no diagnosis. There was a time his body was free from all this - and free from seizures too. And the photos tell the story in their little box. Someday I trust I'll look at them - but for now it's just too painful. And that's okay.

I have a file of what I call 'inspirations' - and on days when I think too much - I open that file and fill my mind with what's true - to combat my fears of the unknown. Here's some of what I read today:

Cory TenBoom: "there is no valley that runs so deep...that God is not deeper still."

Streams in the Desert:

"Is there no other way, O God,
Except through sorrow, pain and loss?
To stamp Christ's image on my soul?
No other way except the Cross?

And then a voice stills all my soul,
As stilled the waves on Galilee;
'Canst thou not bear the furnace heat,
If 'mid the flames I walk with thee?'

'I bore the Cross, I know it's weight,
I drank the cup I hold for thee;
Canst thou not follow where I lead?
I'll give thee strength - lean thou on me.'

Fenelon: "The grace He gives us will be in direct proportion to the amount of suffering we must bear. No one else can do this except the Creator who made us and knows how to renew our strength by His grace. None of us are wise enough to properly apportion grace and suffering. We cannot see the extent of our future trials, nor of the vast supplies of which God is storing up in us so that we can meet them. And because we cannot see those future trials, nor the grace that will be needed for them, we are tempted to become discouraged and despondent in our present situations. We see our trials rolling in toward us like great, overpowering ocean waves. Our hearts fail us with fear at the prospect of drowning. We do not see that we stand within the point at which God, with a steady finger, has drawn the boundary line. Beyond that line the waves cannot pass."

And an old writing of my own: Relinquishing my "right" to my dream for Cody's future is the most painful thing I will ever do. It goes against the grain of human self-reliance. Yet even if God heals Cody miraculously, the surrender still needs to take place. Cody's future is not mine to control - or to lay claim to. Every breath he takes is a gift from the Lord. Every beat of his heart is God's choosing. He belongs to God - and somehow in my surrendering him back to the Father, there is a joy and release that transcends my heartache.

These are the things that encourage me - hopefully you too.

Love, Shawna

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