Determining My Steps

This journey, this road, this path seems to be never ending. I sometimes become overwhelmed with the knowing that it will go on and on and on. In the beginning I never saw this coming. I dreamed of my Ashley. I dreamed of the path her life might take. I dreamed of things like first steps, first birthdays, and all the other firsts you watch your little ones achieve. The steps that have brought us to this transplant road are ones I never dreamed of. Once you have taken your very first step along this path you will never have the option of turning around again. You will always walk along this road. A very dangerous, very uncertain road. It will most definitely be a hard road to walk. There is no easy path once you take that first step. Unfortunately those of us who find ourselves taking steps along this path have had no other options. My Ashley was dying. She was slipping away a little more each day. We were faced with this road or death. What do you do? We prayed. We searched. We learned. We waited. We thanked the Father for the opportunity provided. We came to Omaha.

As the days grow longer and the weeks and months begin to pass by I look around and I see very few faces in the rooms that are still familiar to me. There aren't that many of us still here in the PICU. Not many of us who were transplanted around the same time. Most have gone out of the hospital, a few have made it all the way home, and a couple have been lost along the way.

Even though we were aware of the dangerous path we had embarked upon 18 weeks ago today, I can tell you that neither Dave nor I believed we would still be here struggling to figure out how to feed our sweet baby. We knew transplant was not a cure, and we knew we were grasping at our last chance for our Ashley to live. We knew the road would be long, hard, and uncertain, but it never crossed my mind that she would still after being given a new bowel not be able to eat. The direction our road has taken is a mystery to all. No one knows which way we should walk. There is not a physician in this hospital that can direct our steps. As I sit here facing another day I am confused. I feel as though we are lost on this transplant road and we do not have a map to follow. Nothing we have been told or instructed to try has brought us any closer to home. It seems as though our path will go on forever. I find myself searching once again. I look at case after case. I search through story after story. I am getting no where. I think our path has begun to take us in circles. We are doing the same things expecting different results and we are making no progress.

It is easy to get discouraged. Your feet grow tired of walking. Your mind and your body grow weary. My heart aches to take her home. Home to her daddy. Home to Blake. Home to Allie. I long for us to be a family again. What steps must I take to make this happen? What can I do to help my Ashley? I continue to look for solutions. Tonight as I flip through page after page this is what I stumbled upon:

In his heart a man(or mommy) plans his course;
but the Lord determines his(or my) steps.
Prov.16:9

The course I had determined for my Ashley was very different than the steps her life has taken. I must take a step back from what I had determined her life would be. It was never mine to determine. It must follow the path that He has laid out for her. Her life must walk along the steps that the Father has determined. Can I share with you that this is not easy. There are days when I want to stomp my feet along this path and demand that we be allowed to turn around. I want her to be made whole. I want to take this beautiful little girl home to where she will be surrounded by nothing but love. I don't want for her to have to walk such a painful path, but this is not for me to determine. He is using her life, her pain, her experience to change so many hearts. Mine most of all.

Today I am determined to allow Him to direct my steps. Allow Him to lead us along this path. Allow Him to be the light for us when the path seems to grow dark. Allow Him to carry me and my Ashley when the path becomes too dangerous for us to walk alone. My prayer is that He will determine the steps that we will take today, and that some day He will determine that our road should lead us back home.