Life is Hard but God is Good

I got to go see Kristin today. It was an emotional time for me. When I got there, she was in bed looking away from me. She is really favoring holding her head to the right side. Her eyes were big and dilated. When I started talking to her, I could tell she heard me, but she does not turn and look at me. I loved on her awhile and then decided I wanted to hold her. I had to do some rearranging, but I finally got her on my lap while sitting in a chair with lots of pillows. Her eyes seemed to calm, but her body won't quit moving and jerking. The jerking is different from how it was a few days ago - more like spasticity now. It was hard to hold her like this because she is so big. I turned her around so she was sitting on my lap because I wanted to see what she would do with her head. She got locked into the same position she does in bed if I let her rest back against me - so I held her away from me and tried to get her to work on head control a little. Then I decided to get her up in her wheelchair and see how that went. She sat in it for about an hour and a half and tolerated it fine. But she continued to keep her head mostly to the right and locked back. Her eyes were still big and dilated. I put her movie, "Spirit" in and played her dancing hamster a couple times. She is not tracking or smiling at all. I continue to fear that she has more brain damage and is possibly blind. I cannot be with her without getting emotional. Oh how I hope this is a temporary state for her and that she will again smile and respond to people and things.

I was thinking about all that's happened this last week and how hard it is to know what is right. When Terri Schiavo was disconnected from her feeding tube and starved to death, I was outraged beyond words. I thought it was so wrong for the law to allow that to happen. It was nothing short of starving that poor woman to death. Very inhumane and totally unbelievable. No one would look at her (or Kristin) and not think, "I would never want to live like that." BUT - it has to be God's decision when we die. He is the creator of life and therefore only He has the authority to decide when each life ends.

With that being said, I still struggle with the boundaries between medical intervention and God's intervention. We have Kristin on a "no code" status, meaning that if her heart ever stops beating they are not to give her CPR to start it again. When she got to Riley hospital last week, we were asked by the doctors what our wishes were concerning this. Just how much or how little assistance did we want given to her. In the past she has been put on a ventilater a few times to give assistance until she can breathe more comfortably on her own. She was never been on it for more than two or three days at a time. Just enough to take the stress off her body while she fights off and illness and can breathe easily on her own again. But last Thursday, she quit breathing and the EMT's were doing it for her with the ambu bag (for probably 30 minutes or so) until they put her on the vent. So the next day, after she was breathing on her own again, one of the doctors at the hospital asked us if she quit breathing again, if we wanted them to assist her or not. I really struggle with this question. If they didn't do anything, how long would it take for her to die? Is there a chance she would start breathing again on her own? Would it be wrong to not assist her? Would she suffer if she wasn't assisted?

Sometimes it is hard for me to decide what is right in God's eyes on this matter. I would never want to do anything to "kill" my daughter or to allow her to suffer - but I also do not want to do anything to prolong her life especially when she might be worse off than before. Oh Lord, show me what is right. Show me what is Your will for Kristin. Please give us clear direction on this.

I heard a song on the way to the hospital that really expresses how I feel right now. It is called Life is hard (God is Good) by Pam Thum

You turn the key
Then close the door behind you
Drop your bags on the floor
You reach for the light
But there's darkness deep inside
And you can't take it anymore

'Cause sometimes living takes the life out of you
And sometimes living is all you can do

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

You start to cry
'Cause you've been strong for so long
And that's not how you feel
You try to pray
But there's nothing left to say
So you just quietly kneel

In the silence of all that you face
God will give you His mercy and grace

Jesus never said
It was an easy road to travel
He only said that you would never be alone
So when your last thread of hope
Begins to come unraveled
Don't give up. He walks beside you
On this journey home and He knows

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good