I don't know what to say

I have no idea what to say any more. I know too much to naively proceed. I haven't had an opportunity to even discuss with Dave all that I have learned. My sweet, precious friends who have witnessed this time and time again in their patients love me enough to be honest. Their honesty is what I want, its what I need, but oh how it hurts to listen to their words. They love my baby. They've watched her grow up here in the rooms of this hospital and from following her story while we have gone home. They want her to make it. They want us to leave this place and never return with our Ashley, but they have watched and cared and treated this before.

They hug me, they hold me as I fall apart, they pray for my Ashley, and their hearts break to see us living the nightmare of when transplants go bad. I know these things and yet I still am trying to hold on to the chance that she might beat this. As bad as it is she might.


I spent the evening with Allison while my mother in law spent the evening by Ashley's bedside. You would not have wanted to trade places with either of us. Ash struggled all night and continues to do so. Her pain is great. So great in fact that neither dilloted or lortab have touched it tonight. She continues to moan and cry as huge tears fall onto her cheeks. My Allison and I spent the evening talking and crying and holding on to each other. Her heart is so broken. She knows and understands what is taking place. We talked about all the options and what could happen and I asked her what she would want us to do. Her answers were heartbreaking and I couldn't help but sob. She will not accept the fact that they may just let her die. She is hurt and angry and demanding that we help her. I can only imagine how hurt and angry Blake is going to be once he is made aware of the depth of Ashley's illness this time. My heart is broken for my children. Broken for my sweet Ashley. For my Allison. For my Blake. I hurt so bad over the pain they are all experiencing. Allison sat on my lap and cried for a very long time. She finally lifted her head and said, "I just want to do this for her. I wish it were me and not her." Oh my sweet girl if only I could take her place. I would in a moment. I would die if it meant your baby sister could live. I would give my all, my everything, my life for her or for you or for your big brother. There is nothing I would not be willing to do to spare the pain of this situation for all of you.

Tonight we talked about what the options are. How may this happen. First and foremost she could recover. Its looking pretty unlikely, but she still could. The recovery from the insult of this organ will take a very long time. It will not happen in weeks, but rather months and months. The other thing that could happen is that she not recover and that she have the organ removed before it kills her. In that case she would live on TPN until she could no longer survive. It would more than likely be just a short time. The third thing that could take place is another transplant. Although I am being told it would be almost impossible to make it work for her again. If by some chance they could perform a transplant and organs did become available she would have a very hard time surviving it with such little access. In only one scenario does my daughter live. It is that scenario that I am asking God for. Asking him to spare our children the pain of losing our Ashley. The other two are death sentences. They will be horrible deaths. Very painful. Very difficult to watch. I am beginning to understand what Dr.G. meant last week when she told me my Ashley's life would never be like it was before she came here. Her good days are probably over. Her happy, go lucky, play all day life will never be hers again. It will be a difficult life filled with a lot of hurt and pain for my girl.

I don't know why I'm sharing these things. I really don't. I am trying to process the facts and the fact is that without a miracle my daughter will celebrate her 5th birthday and probably never see another. I hurt so, so much. Never did I imagine pain to the degree that my heart is feeling at this time. Watching my girls both suffer in different ways today has almost done me in. I emotionally spent. I am exhausted. I am what I am. If you have ever wanted to see me at my worst, my lowest point to date, you are looking at it. I am living what my nightmares are made of.