I was 100% certain and convinced (faith) that Mic would gain her oral skills through the therapy we did with her and that soon...very, very soon we would be kissing that g-tube a sweet goodbye! I had an open mind as to how and when that would all happen, but I knew it would be soon and did have a time cap in mind.
In the process in some ways the tube became the enemy. Something to be shaken off and freed from.
There is an ever working, ever changing battle in my mind and emotions as I deal with different aspects of Mic's eating impediment. So here I am, trying to put the latest round into words...
...I cannot, I will not let that faith, that belief die. The certainty that someday she WILL sustain her life just as you and I do, 100% oral.
The latest adjustments in me concern time, expectations and perception. I find myself in a spot that I never visualized or planned for. Accepting the progress gained as good and valid, even if it was not the progress I had planned for. Letting go of the time restraints in my head. Backing down from "fight" mode. And entering into "rest" mode. Where the g-tube must be my friend, causing life to sustain and THRIVE, until the miracle comes. My allowing and enabling it to happen...in its own time.
This is not simple, nor easy. But necessary and good. A continued process.
To be less abstract and more concrete, her actual oral calorie intake is not increasing in the stair step pattern we had hopped to see post therapy. She is managing between 150 and 350 oral calories on any given day. We are working hard to sustain that number and trusting that somehow, sometime, it will begin to increase.
...and...that's where we are at!
3 comments:
My immediate thought as I was reading this... "Be still and know that I am God."
My immediate thought was of God's promise to Abraham that he would be the father of nations...that his seed would outnumber the grains of sand.
We see Abraham struggle with the time issue too. But in the end, when God tells Abraham to take Isaac up and offer him as a sacrifice, Abraham has progressed to the place of faith that he does it, unquestioningly.
The journey of growth God has us on is not an easy one. But you are in SUCH GOOD COMPANY!!! And they are standing on the sidelines as you are running this race, cheering you on. They KNOW what you are going through and how hard the road is, and how long the race is; but they are shouting along the way, GO, GO!! You can DO this!!
good luck....thinking about you guys (and wishing for your warm weather!)
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