I have none. It escapes me. I search and search for direction, peace, insight and find none. I am still in this place of indecisiveness and I have no idea at what point I will be ready to say "lets go."
Most days I get through easily. In the daylight hours life is so busy that I rarely stop to think about things. Every once in a while I catch a glimpse of our Ashley and I freeze, stopped in my tracks with thoughts of transplant but I to snap back as quickly as it started. Its the night times that bring me the hardest struggle. Its always been in the late evening hours where I struggle the most. The house is quiet, Ashley Kate is snuggled in her bed, Dave lay sleeping next to me. The hours of darkness are long and I search and plead and pray for answers. I pray for ease of transplant. I pray for direction in this circumstance or that. I pray and I pray until I have no idea what words to even continue praying. My heart aches and my mind races with scenarios of times past and wonders if they are to come again. I want to spare our Ashley. I want to keep her safe. I want to ease the struggle. I want to eliminate any pain of surgery, of sepsis, of unseen circumstance. I don't want to see her hurt again. I can't explain how very impossible the situation feels as you watch your tiniest girl endure such unimaginable pain. Still I know that none of this can be avoided. None of it. If we don't proceed with transplant at some point and take the risks then she will not grow up. She will die. She will run out of time. We are in an awful, awful place.
I've made no secret of the fact that I never want to take her back. I don't. Last night I cried huge tears as I wondered who would in fact be there to take care of my Ashley. All of my precious, friends who have cared for her over the last four years no longer work at UNMC. What am I going to do? Who do I trust? Who is left that loves Ash? It is so important that they love her. It makes all the difference in the world. I can't explain it, but the unthinkable is more bearable if I know that they love her. That they are invested in her. I'm so afraid. It keeps me awake at night as I wonder who will be there when we arrive.
What is going to happen when infection sets in? What is the plan? I need direction, answers, plans in place. How can we transplant her without a plan of what to do if her line has to be pulled? There are no other sites. How will she be supported during crisis? How will she be kept alive as her body battles the rounds of sepsis? I don't know of any bowel transplant patients who have made it through without at least one round of sepsis. It would take a miracle. An absolute miracle to survive with only one line sight. These are the thoughts that keep my mind racing at night.
Today, I'm watching Ash play. She's making music and giggling. A ladybug tambourine in one hand and a harmonica in the other. Her laughter fills the rooms of our home and I want nothing more than to keep her happy and smiling for the rest of her life. There are no smiles, no laughter, no play enduring and recovering from bowel transplant. Its miserable. I don't know how to do this again. I just don't know.