Ashley's Story

She will leave fingerprints all over your heart


A new Place

Wow, I pause to think of this new place we are in as parents and wonder how are we going to pull this off? Really, parenting Ash has always been a little on the unconventional side of things, but now? how are we going to do this? I'm a little scared, really intimidated, and not quite sure how our day to day life will be. The only thing I do know is that I love her, her daddy loves her, and we will take it one day at a time.

I look at the central line exiting her right side and stare. It looks just like a regular central line. A little longer and heavier, but still a central line. Uncoiled it extends to her knees. Yeah, not sure how moving around the house for her is going to work. They don't put hepatic lines in pediatric patients enough to even make a pediatric size line. Like I said, we are in a whole new place. The knowledge that it is tunneled through a large vein through her very sick, transplanted liver is the intimidating part. Wow, its dangerous. It really is. Do you know that a home health company wouldn't touch us with a ten foot pole. Like our physician said, "She has a line. Its what had to be done." So...we will adjust to the danger. We will learn to watch for the warning signs of internal bleeding. We will be careful.

How do you raise a child without a bowel? A whole new place for us. She is entering into an unknown territory and we are following right behind her. We will do this. I'm not sure how, but we will.

Re-transplant? Taking this journey and starting back at the beginning? If they will allow us to? Yeah, we are going to try. Look at her. We have to. She's amazing. She's precious. She's strong. She's a fighter. She's going to do this. She is. She has to string together 3 good, healthy, infection free, full months at home with no hospital stays and then we can return to "chat".

Knowing what we are up against is intimidating all in itself. Knowing who I am facing it with and for is making it ok. We are doing it for Ashley Kate. We are doing it all together. I'm not looking forward to the struggle or the process. I am looking forward to watching her grow up. Either way this road turns is going to take us to a whole new place. If we are blessed enough to get another transplant or if we take care of daughter for as many days as God allows its going to land us in a new place.

I'm afraid. I'm hoping that confidence will replace the fear. I don't know what tomorrow will bring. I don't even know what this afternoon will bring our way. I do know the One who does. Because of that I will wake up to face another day in this new place tomorrow.


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