What are we going to do?
That was my question to Dave this evening. He looked me in the eyes and said, "We are going to watch her beat the odds. Thats exactly what we are going to do." With that said I nodded my head in agreement and thought to myself that I sure hoped that is what we were going to do.
I guess I've been bombarded with days and days of such devastating news and scenarios that I lost sight of the fact that we were talking about my daughter. You know, the littlest one, who has beaten the odds her entire life. Yep, he's right. We are going to watch her do it again.
Such is life in the land of rainbows and daisies. We don't give in to the negativity threatening to swallow us whole. We concentrate on the positive. Find something good and celebrate it, hold on to it, cling to it if we have to. Its a land where our daughter doesn't die and she doesn't continue to suffer. Its a land where we bring her back to her home and watch her grow. Its the life I want. The life we had, the one that is being ripped out from underneath us.
It is refreshing to have him by my side. He gives me strength when I thought I had none left to give. He often tells me that I'm the one he would want in his corner if he were ever stuck in a hospital. I guess thats a good thing. He watched me go toe to toe over an additional blood draw scheduled for tomorrow. Once is enough. It just is. I pleaded our case for our daughter about desiring quality of life for her and protecting her against yet another discomfort. Eventually it was decided we would switch meds to one that didn't require that extra draw to measure trough levels in her blood. I could see him out of the corner of my eye. At the end of it all a smile crept across his face. I knew he was glad that I stood my ground. I knew he was proud of me. Its just that I'm tired. Really, really tired of having to plead our case for quality of life to the same group of people over and over again. I guess in the back of my mind, never pushed to far out of plain sigh,t is the thought that I refuse to stand before the Lord and tell him I didn't give it my all where our Ashley was concerned. He gave her to me to take care, to protect, to provide for and that is something He did not have to do,but He did in fact choose me. Its not just that I'm here taking care of her, its that I have to answer for every decision made, every consent given and every obstacle placed in front of us to tackle.
The decisions we are facing are just unbearable. I can't even go into all the details and all that my heart feels about them. I'm just praying that healing has taken place and that we would be spared the unthinkable choices. Its my hope. My prayer.
Its been a very long day. So much has happened and I'm exhausted. Ash is receiving her pain meds as I finish this post. They have changed them to every 2 hours in stead of 3 now to attempt at giving her some better coverage. I'm hopeful she will find rest tonight. I know we both need it.