This is not how is should be...but God isin Control

an update on Calli:  She is not really eating, her tummy is barfy-feeling; but she is drinking a lot.  She is sleeping around the clock, and I bribed her into letting me take this picture of her with this hat that I crocheted for her while she was sleeping.  

Her cheeks are nice and rosy from the fever.  Not much has changed, she is still having spikes of really high fevers, but the Tylenol keeps them tolerable at 101-102.  We now know that Calli has a kidney/bladder infection; and the bacteria that is causing it is resistant to the antibiotics they have been giving her since Monday.  

The doctors have sent more cultures to the lab, and because she is drinking enough and they can't do much.... and a hurricane is coming...he gave us a choice of waiting another day in the hospital for the results, OR sending us home with another antibiotic that hopefully will be effective...

I chose to take her home.  It was hard getting her out of the bed, she just wanted to sleep and rest, not drive the almost 2 1/2hours it took to get home in the evacuation traffic.  Mike wanted us to be home before the hurricane hit anyway.  He was wondering what would happen if the Schuylkill flooded (which is a few blocks from the hospital) and he reminded me that our Suburban was several stories under the ground......ha ha

While it was not exactly where we desired to be again, A wonderful thing happened while we were there in the hospital.  Dr. Phillips, the chief of Neuro-Oncology at CHOP, came in all smiles (yesterday) with his brood of residents and fellows following him.  I did not know who he was (there are so many doctors), but he was so excited to examine her and said, "It is so nice to finally put a face to those MRI's." 

You see, Calli is a miracle.  We know this.  Dr. Phillips went on to say..... in not so many words, but more in his facial expressions and examination and was sort of showing her off to his residents.  He was sent to remind me what I already know... she is a miracle, she is extraordinary, she will beat this, she has already beat so many of their odds, defied their assumptions, their facts, their prognosis.  

As he pushed and pulled and tested her strength against his...he beamed.  Looking up as his residents, all smiles, he said, "See she is this way....but should be that way... This is this and that...."   I really had no clue what he was saying at all, they were neuro terms...but he was..... excited and beaming and happy to report that even while she is having such high fevers, weakness, infections and radiation side effects....even while she is barely able to get out of bed...she was strong!  She could walk!  She could move and rotate and push his heavy hands off of her legs in all the right ways you do when a doctor says, "Don't let me push you down."   Then, he said, "Can you walk for me please?"  

Catching on, she went to get up and he offered to help swing her out of bed and steady her, but she politely refused his help and did it on her own.  She walked weakly, wobbly and unsteady to my eyes.....  I mean compared to when she is well, and has energy and not dizzy.  As I glanced over at him, he looked like a little boy all proud of something he made.  He was amazed and told them all to take note of her walk.....  She should not be walking, she should be on pain meds, mega steroids and wearing a brace.  

I commented to him how weak she was, and wobbly and that she walks much better, not to mention that I just took her off the steroids she was on since the end of May.  He exclaimed, that she was walking so well, especially since she was sick, and off the steroids and just finished radiation.

I believe that God sent Calli to encourage that doctor.  It was not the doctor that gave Calli strength, or the meds, or the radiation and chemo...all of those things make her weak.....It was God, it was the strength he gives her, He is our only hope.  

When you are surrounded by half-dying children, babies, teens...when you read about this Glioblastoma...when you read the diagnosis, the reports, the history, studies, and facts that this is a "terminal, incurable" cancer...you can become hopeless.  

But my focus is not behind on the past histories and trials and statistics, it is not to the left or right of me on those others that are so sick and weak and dying, it is not even ahead on what future trials, or medicine they think can help give her..... in their eyes, to buy her some time.  

My focus, my only hope, my eyes are looking up.... To God, who formed her in my womb.  To the God who formed the stars...to my God, my Father who created this beautiful, strong, vibrant and stubborn in a good way, child.  God is our only hope, I am glad that we have not other options!

  Watching her, I know that I was encouraged and reminded of how much God is in control of our lives.  Even while she is sick, weak, and unable to enjoy life....this will pass.  God has a much bigger plan than I could ever imagine. 

I was given a cd

When we do not understand why or how things like this could happen.  When we blame ourselves, and our hearts just want to rewind and do over a lot of things done and said to our children....when we break down and cry and cry and think that life is unfair, that this is not fair, that it should be me, not her........God is in control.  He knows.  His thoughts are higher than ours.  It is too much for my brain to even wrap around, so I will just trust Him.

Here is one of the songs, that just touches the very core of my heart right now.  I encourage you to buy it, listen to each song, each word.  

This is not how it should be
This is not how it could be
This is how it is
And our God is in control

This is not how it will be
When we finally will see
We'll see with our own eyes
He was always in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control

Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That our God is in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

We're waiting for that day
We'll keep on waiting for that day
And we will rise
Our God is in control

  Holy, holy, holy

Our God is in control