An attempt...

At putting my heart, my hurts, my feelings into words tonight. Just an attempt because truly I struggle to find the right ones to use.

Dave and I stepped out tonight to try and escape reality even if it were only for two hours, in the dark, holding hands, while watching a movie. Sadly though even the dumbest of movies can bring me to tears and cause my world and its reality to crash down around me. So as I sat watching Planet of the Apes nonsense with my husband tonight two words, or actually two signs caused me to hurt so deeply and sob so hard on the drive home that I became physically ill. Home, please.

As I literally feel apart on the short drive home crying so hard that Dave could barely make out my words the weight of it all came bearing down on my heart. As we pulled into our driveway I said, "That was a stupid movie about monkeys. I don't want to see that again." To which my husband replied, "Well...I didn't quite draw the same parallels between it and our life that you did, but I'm wondering ... so which one was Dr. L?" And then I laughed. Really hard. If you aren't in our transplant world at UNMC then that makes no sense to you and thats ok because if you are in it then you know why I was laughing so hard. I'm pretty sure Dr. L doesn't read this blog so I'm safe in sharing that with you all. And no...none of them reminded me of Dr. L. It was just funny.

"Home, please." Thats all it took. Why? Because when my sweet Ashley looks at me with tears in her frightened eyes and signs "home, please" there is nothing I can do. Nothing. I won't have the ability to choose that for her. I won't be able to say, "Enough. We are going home. NO more." Once we go back then we are back there until they say we can go home and that is an unbearable thought. Not only can I not choose when to take my sweet Ash back to her home but I lose all ability to make choices for her. Period. As I cried I tried my best to explain to Dave. CT scan? Whenever they say. Blood draw? For whatever reason any body sees fit. Back into the OR? No say so. Flip on the lights? Just because with no thought to a sleeping baby girls comfort level. I know, I know, I know that its all being done in her best interest, but it doesn't change the fact that it is being done without explanation, without being part of the decision making team, without my consent. Its just being done. I can no longer protect Ashley Kate from any of it being done to her whenever someone deems it the time to be done. I am merely a bystander. I will be informed of it and that is all. I can only attempt to comfort her through the process, but protect her from any of it...I can't. At what point do I yell, "Stop because its not longer being done for her but to her?" Is there a point that it comes to that? I don't know the answer. I truly don't.

What I do know is that we are in an impossible place. IMPOSSIBLE. I do not want my daughter to experience another moment of discomfort in her life, and yet if I do not allow that to take place then she will die. HOW is any mother supposed to choose in this situation? HOW?

She has yet another line infection. They are coming every few weeks. She has bounced back and recovered again and again over this last year, but that can't go on forever. We know that. Dave says we are at a fork in the road. One direction leads to death. We don't know when it will come or in what exact form ,but it is certain death. There is a cliff at the end of that road. The other direction has a small glimmer of hope shining at the end. What is on the other side of each bump in that road is unknown to us and one of those bumps may very well end her life, but there is still that small glimmer shining at the end. The other road is just dark. No glimmer. Just a cliff. One that we will eventually watch her fall off of. So...what do we do? Do we travel the road with the cliff at the end of it and try to make the most of every single day until we reach it or do we travel the familiar road with all those painful bumps along it in hopes of making it to the end where the light of hope shines?

At the end of each day my goal is for Ash to live a happy life. If I only knew how many days I could have with her then I think the choice for me would be easier. Tonight it all seems so cruel. So unfair.

Ashley Kate lays sleeping in her own bed tonight. She is weak. Really, really weak. Her pulse is strong. Her temperature is down. Her oxygen sats are high. Yet, she lies so still, so exhausted, so worn out from battling this infection. We still do not have an ID on what is growing inside of her blood stream. We still do not have sensitivities. We are treating with Rocephin because all we know is that she is growing gram negative rods. It could be anything from E coli to psuedomonas to Klebsiella. We just don't know yet. All we know is that she is out of it tonight and its frightening to see her lie so still and so unresponsive. My heart breaks to not see her twinkly eyes and sweet smile. This afternoon she pulled me in close to her and hugged my neck as tightly as she could. Tonight she doesn't even open her eyes when I kiss her forehead and whisper to her how very much I love her.

My heart hurts. It hurts so bad. I don't wan't this time in our home with all of us together to ever end and yet I feel as though we are watching it come to an end so much sooner than we had hoped. Ashley and I will be back in Omaha one of these days and Dave, Blake and Allie will stay behind. The thought of that has tears rolling down my cheeks faster than I can wipe them away. Ash will hurt again. She will teeter between life and death again. She will have to endure the pain, the confusion, and the odds stacked against her once again. I hate that. I really HATE knowing that and being powerless to stop any of it.

So there is my attempt at putting it into words tonight and as I read it back I see that I failed. It doesn't even scratch the surface on all that swirls though my head and hurts my heart. Not even the surface.