Few and Far Between

I so wanted this to be a place of joy. Of great celebration. Of miracles and blessings. My original intention with this journey was to give our family a place to see our Ashley, hear about her current goings on, and walk the road to transplant with us. It was just easier to write than to call every member of our family.

In the beginning I had no idea what this story would read like. Had I known perhaps I wouldn't have shared it. I'm just not sure, but as I read the last few posts I realize this is no longer a place of joy. There has been great joy at times, but lately it has been filled with heartache and pain of the deepest kind. For that I am sorry. I truly am. I knew in the beginning of transplant that it would be "rough" at least thats what we were told, but I also thought that the day would come where it would all be behind my girl. How naive I was. I now know that it will never be behind her. It will rise up to try and steal her from our home at any time throughout her life.

A day never went by that I was not grateful. The gratitude I felt for each moment and each day with Ashley consumed my heart. It still does. I just didn't take anything for granted. I've spent every shower(its quiet in there and its the time I have each day to myself) of every morning giving praise and thanksgiving to our God because I knew she was a gift. Her life, her transplant, her second chance was a huge, miraculous gift. Still as I watch her hurt and struggle I am grateful. So grateful to be her mom. To be the one who is allowed to love her. I am truly grateful.

I guess I just wanted to say to each of you that its ok if you can't continue to read our journal. It is. I know it hurts. Oh, how I know the hurt of the words written on these pages. I so want to share the joy of her life with you. Its just gone from us for now. I pray its not gone forever and that it will be returned to her. You don't need my permission to be here. You are all welcome here. What support and comfort your words and prayers give to me. You don't need my permission to stop being here. I only want you to know that I understand if you can't be. I really do.

For now the pictures of my sweet Ashley may be few and far between. Trust me when I tell you that you do not want to see the pain on her face and the hurt in her eyes. Its all I can do to capture it for Dave and I. Not that we want to remember her hurting, but that I don't want to regret not having her picture each day in case her fight were to end.

Ashley's platelets have been wiped out from her treatments. Its what was supposed to happen. So before surgery and biopsies she is needing to be transfused for her safety. In addition to the platelets she is requiring lots of albumin today. They still would like to run her thymo treatment, but are discussing the dangers of each side. She is in a very miserable, weakened, state and the thymo will only take her farther into the pain, but she needs the thymo to stop the rejection process if she is to have any chance at all. Its a tough place we find ourselves in. The decision has not yet been made.


Your prayers for her today are very much appreciated. If I know anything, even in my despair, I know that God is bigger than any of this and I know that NOTHING will take her from us if it is not under His watchful, loving eyes. He is not surprised. Although I am. He is not numb. Again, I am. He loves my daughter and as painful as it is to watch as her mommy I still know He loves her.

Ashley Kate loves her life. LOVES it. It is worth fighting for. We owe her that and therefore we will not stop until she can no longer fight. It is God's timing not ours. We do not give her breath. Only the Father does. She can do this. She wants to go home to her life. Before that can happen she's got a mountain to climb and miracle to be a part of. If anyone can survive, its my Ashley. We are from being at the finish line. Ashley, believe it or not is stable. She is breathing completely on her own. She is awake and alert although she is in a great amount of pain. We are not at the end. She is at great risk of losing this organ. She is at great risk of infection and sepsis. The risks are very real and all around her, but I'm believing in Him to protect her during this vulnerable state that her immune system is in. God could bring her out of this rejection process at any time. She could come through her recovery unscathed by any of the things that are predicted to take place. God is that big and that capable. He is.