Ashley's Story

She will leave fingerprints all over your heart


In the Face of Decisions

This morning I feel the burden of the decisions before us heavier than I prefer it to be. I lay awake in the bed until the early morning hours with the weight of what has transpired over the last 5 years and what lies ahead of us this next year. Its not often that I even allow myself to reflect on what our decisions in the past have been. The what if we did this instead is much too big of a burden and I can't change where we are today anyway. I guess my heart is just hurting as we face such uncertainty and such challenges. How I wish I could rewind and be back to where we were or fast forward and be past what we are facing. In all honesty I don't know what to do. I remember so clearly the words of Dr. G and much they hurt my heart the day she said to me, "Go home and talk. Really talk. Then decide. You think you know what your decisions are today, but take her home and then decide." I didn't get it then, but I think I get it now.

How do I take this child, this child who has come so far, fought so hard, and finally is back to a place of contentment, happiness, and "stability"(i use that term lightly) and put her through what will be a nightmare that I hope one day on the other side we will all wake up from? I am so torn. Torn between what I know we have to do and what I so desperately want to spare her and our family from. My heart hurts deeper at this point in her life than it ever has before and yet it leaps with joy as I listen to her playing in the other room this very moment. How can I hurt so much and be so happy at the same time? It is a constant state of turmoil that lies underneath my surface.

At one point this weekend I watched the twinkle in her eyes, the smile on her face, and the joy that radiated from her and audibly spoke what I was thinking, "I can't imagine life without her here". A thought I have hundreds of times a day, yet never voice for the sound of it causes me to shutter. This little girl is so wonderful. So full of life. So full of joy. We love her deeply. Deeper than I ever knew possible. Its a love that I feel physically as I pick her up, hold her close, kiss her forehead, and breathe her in. I feel her. She is such a part of me.

Its time. The teams awaits our call. The insurance approval came in late last week and now we choose the date for which we wish to return. Currently the ball is on our court and we are trying to decide at which point we toss it back to them. What is best? What is best for Ashley? I thought this is what I was waiting for, but now that it is here I look at her this morning and the tears roll down my cheeks. Do I do this to our baby? Again? Do we choose this for her? If we don't she will die. If we do she will suffer for a while and still may ultimately lose the fight. In between those two scenarios we have a very small chance that she will survive and live yet again the life she loves so very much. There really is no decision to be made. We KNOW we are going to try and get the team to transplant again. We KNOW we can't look at our 5 year old and stop fighting for her life. I just don't know WHEN we want the fight to begin. If you could see her today you might mistake her for being "ok". Its a deceptive place we are stranded in. She is not "ok", but she is happy. She is not scared. She knows she is safe. At which point do I take those VERY IMPORTANT things from her? Today? Next week? Next month? I don't know.

Ashley Kate is much, much stronger than she was the day I carried her body back into our home. There were nights that I sat up all night for fear of her slipping from us while we slept. She was so fragile, as were we. Today, its not that she is not fragile, its that she has adapted and adjusted and so have we. Her life is very, very different than it was before July of this year and yet it is very much the same because she is home. She is where we all want her to be. She is not growing up inside of a hospital room. She is living to the best of her ability the life God has given to her.

Still, we have no idea if transplant is even an option for her. That is what our return trip will decide. If it is possible. If it is possible the chance for success is much, much smaller than it was the first time around simply because there are no central access points left in her tiny body in which to support her life through as she recovers. Its kind of like a one shot deal. One infection could prove to take her life without a place to go back in and try and save it. This reality is paralyzing to me. I've seen the recovery process. I've sat next to her bed and watched it for months and months on end. It will be miraculous for our daughter to come out on the other side of another transplant. Really, really miraculous.

I'm afraid. Afraid of evaluation. Afraid of the venous study. Afraid of interventional radiology. Afraid of anesthesia with her new anatomy. Afraid of mistakes being repeated that could cause her to be hospitalized during the evaluation process. Afraid of our transplant teams decision. If they tell us it can't be done what will we do? If they tell us it can be done what will we do?

After this many years I have learned who I trust at UNMC and I have learned whom I don't. How are we to get through this nightmare again knowing everything we know? We are not naive this time. We know too much. It is going to be a very, very rough ride. It scares me.

We are currently looking at schedules and trying to coordinate when Dave and I can go to Omaha with our little one. Our hope and prayer is to keep her outpatient through the process and to return home with her in a few short days. There isn't much to decide. Either they can create line access above her diaphragm making transplant a possibility or they can't. One test. One study. One outcome.

Facing these decisions and the ones in the weeks and months ahead is our biggest challenge as parents so far. We don't take them lightly. We are seeking answers and praying that in the end our choices will have been the right ones. We desperately need the Father to orchestrate and lead the entire process from the timing of the evaluation to the timing of transplant. We are powerless to make it all ok for our children and our family. It is a helpless feeling when you realize that no matter what we decide it is His decisions for us that will count. At the same time it is comforting to know how much He loves us and that He is working on our behalf.


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