A bargain with God

 I bargain with God, even though I know that's not how it works.

Offering to live a life of service, if He will just restore me, to some state which I consider normal. 

When I spoke of Victoria Arlan's journey in my post about her book, this is what I meant, when I said that our lives paralleled each other. Living inside yourself is difficult. Having the tendency to wake up at all hours of the night, and not be able to go back to sleep, leads to some dark moments. I no longer wished for my own death, but at one time I would lie awake in my bed, and ask God to take me. 

I have some movement, especially on the left side of my body. Though, It is consistent with someone with incomplete Locked in Syndrome like mine. I'd like to think that mine is some sort of miraculous case, but it's not.  

My left hand and fingers, along with my left foot and toes. I have noticed some range of motion increase in those areas, as well as with my head and neck. I have detected some slight movement in my right fingers. 

The same way that was the case with my left hand and fingers, nearly a year ago.

Although minuscule, I believe there has been some improvement in my motor skills. I have always held out hope, that one day I would just wake up with my abilities restored. We can always pray for a miracle. 

When my wife first breached the subject of me coming home on hospice, I was admittedly a little scared. 

We had placed my Mom in hospice when she was sick. I had been told at the time, that your life expectancy needed to be 6 months or less. My understanding of hospice was that it was end-of-life care. 

At that moment, I was not prepared to throw in the towel. 

I thought for a short time, that the doctors were telling her something, they weren't telling me. She told me that there was no longer a time limit on how long you could be on hospice. 

Apparently now you can take as long as you need to die, as long as you are showing some degree of a decline in your health. 

Unfortunately, I have been able to meet the guidelines, with my repeated congestion and my steady decrease of muscle mass. 

It's a terrible feeling to know you're wasting away. 

Amanda, my hospice nurse, told me she's worried that if I don't stop having these infection issues, the antibiotics could lose their effectiveness. I pray that I will someday, 

I will not qualify for hospice, because the improvements I show, no longer qualify me to participate. I still have sleepless nights, when I lie awake and stare at the walls.

 I no longer pray that I will die. 

If I have a conversation with the Lord, it is to thank Him for all my blessings!, and perhaps that He allows me to heal. I know that this is the winter of my life, but I hope it is a long, cold winter! 

I've looked at life from both sides now, 

From win and lose and still somehow,

It's life's illusions I recall, 

I really don't know life, at, all. 

            - Joni Mitchell