There are days
There are days when the weight we carry is so, so heavy. There are days when the happiness we are surrounded with is clouded with the pain we know lies ahead. There are days when I honestly fall apart not knowing how we will ever begin all over again with our girl. There are days when it just hurts so very much.
Last night I lay my head on Dave's chest and wondered aloud, "how are we going to do this? how will we ever take her back?" Ashley Kate had an especially good day. She was so giggly and so happy it was contagious. You couldn't help but laugh as she belly laughed at the silliest things all day and all evening long. As I was readying her for bed she lay there watching me work on the pumps and tubing. If it became silent for a moment she would burst out laughing. Her laughter would cause me to laugh and before you knew it we were both laughing so hard at absolutely nothing. I would get quiet. She would get quiet. Then....the laughter from her tiny self would begin again. She laughed so hard you could see the empty space from the loss of her teeth which would cause me to laugh as I informed her that if she kept it up I would be investigating where to order a flipper. She had know idea what I was talking about, but we laughed and laughed together. The room became quiet again and my eyes filled with tears as I stared at my beautiful girl. She is so beautiful.
I look at my Ashley as she plays all day and I am tormented with the knowledge that I hold. Oh, Ash...what are we going to do?
Ashley is so innocent. She is so unaware that her body is not whole. She is oblivious to the pain and the struggle that she is facing. As her mommy I want so desperately to protect her and yet it is out of my hands. How will we ever live with the decisions we are making for her? If we continue waiting, and lose this window of opportunity, will we forgive ourselves? I wish I knew how long this window would be open. If we take her back, allow her to be laid down on that surgical table, and lose her in the end, will we ever live again?
Life today is so wonderful. Its precious. My sweet girl is so silly, so happy, so full of energy. She looks and feels so great. Its deceiving. It really is. Every once in a while even though we have thoroughly explained the place in which Ash is to the older kids one of them will say to us, "What do you mean she still has to go back? Why would we do that? She is doing so well?" Every time this happens it feels like I've been punched in the stomach. This so hard. So hard. We are living on borrowed time. Although the time is amazing, and all appears to be right, its not. Time will run out. It will. Dave and I know this. How much time do we have? Weeks? Months? A year? I don't know. I really don't know. Will she survive another transplant? Do I risk the quality of her life and gamble for the results we hope for? Can she keep going and going and going on this last central line? I am so conflicted.
My hope is that in some way God will direct this path for us. Its easy to say, but not always so easy to know what direction He is leading. At this time, we know we will transplant her if we are told that she is a candidate for listing, we just don't know when we will list her for transplant. We have no clear answers. We feel no clear direction. So we wait. Still we wait for answers, for a plan, for a prompting from the Holy Spirit. In the in between time we are living. Watching our 5 year old baby play and play and play her days away. So sweet. This time we are living in. I allow the worries of our world to fade away as I stare at the image before me. As I listen to the laughter in the air. As I kiss those cheeks. As I brush her hair. As I hold that sweet, sweet girl close to me.
There are days when it hurts so deeply I feel the cut of the pain that has pierced through my heart. There are days when the burden is so great I feel crushed underneath it. There are days when I wonder what we will do when the time comes to board that plane. There are days when it all becomes to much for my heart to bare and all I can do is cry. There are days when I think I would trade places with anyone, absolutely anyone to not feel the depth of these decisions that are trying to crush us. Then I realize I wouldn't trade a moment of this life I am living. I wouldn't. Trading it would mean that I missed it and at this time I'm not willing to miss a moment of this life I spend with Dave, with Blake, with Allie B., with our precious Ashley Kate. I am where I was created to be. I know that. I just wish we could be spared the struggle that is taking place in our lives all over again.
We have no other option than for our Ashley to survive another transplant. Anything other than her coming out on the other side is not acceptable. She has to make it. She has to live. She just has to. We can't imagine any other outcome.