Ashley's Story

She will leave fingerprints all over your heart



Its been a whole week since the first time we heard the word rejection(this year I mean). It was last Friday that Dave and I sat in a waiting room waiting for a phone call from her GI doctor. He finally came out and sat down next to me to show me the pictures of her scope. "I think she's in rejection. Not mild, but moderate to severe. I could be wrong. I hope I'm wrong, but it looks like it to me. The slides are already on their way to Omaha. Lets see what they say." Stunned. Silent. Scared. Sad. I knew we were headed to Omaha. I had hoped we wouldn't be, but at that moment I knew we were leaving. Leaving our home, her daddy, Blake, and Allie. It hurt. I had very little hope that Omaha would say anything different the next day. I saw the pictures. I could see the angry appearance. I knew. He was right.

That night Dave and I tried to ignore that we were at the hospital. After she drifted off to sleep, we ordere Chinese food and put in a disc of Everybody loves Raymond and watched old episodes together as we lay on top of an air mattress on the floor. Just like we would have done had we been in our bed at home. We didn't talk much. There wasn't a whole lot to say. I drifted to sleep with my hand in his as I prayed that it was all a bad dream. I would be driving back to Longview to watch Allie play in a tournament the next morning. My wake up call from our nurse was coming in at 5:30. Emotionally I was exhausted and my eyes hurt from all the crying. Maybe just maybe we were all wrong.

The next day I watched our beautiful Allison do what she does best. It was a wonderful exciting day. She had a great time. She hung out with her friends between games and acted silly and care free. Exactly as she should have. She had no idea we were waiting on a call from Omaha's pathologist. She didn't need to know. She needed to be 10 years old that day. She needed to play the game she loves. She needed to act silly with the other girls. My heart ached as I watched her. Late that afternoon with 3 wins under her belt I drove to our little yellow house with Blake and Allie in the car. We were goofing off and being silly when Dave called to tell me how serious it was. "Get your things together I've already spoken to Air Medical. They'll be here in a few hours. I'll go with you girls, but I have to be back in the office on Monday. Let Blake and Allie know you are leaving." Instantly Blake said, "What did they say?" I did not want to answer.

As soon as we came home Blake took off for his room. He didn't want to talk. He needed a few minutes. Allie sat down on my bed while I threw things into a bag. "Mommy, I have a good idea."

"What's that, Al?"

"When you get home from Omaha maybe we can watch this movie together since we haven't seen it before. Do you think we can? How long will you be gone?"

"I'm not really sure, but when we get home I would love to sit with you and watch that movie." I kissed her on the top of her head and went to find Blake. By this time he was in the game room slamming ping pong balls against the wall. He was hurt. He was angry. He hugged me goodbye and held on so tight it broke my heart. This was my 13 year old. Angry and confused. It almost broke me. I couldn't blame him for being angry. I was too.

A lot has happened in the past week. We've all worked through the emotions of being separated. By the time the plane arrived in Shreveport Blake had already called to let me know it was going to be alright. I'd bring her home soon and they would be fine. "Just do what you have to take care of Ash. Me and Allie can take care of us." Have I ever told you how much I love my son? He is amazing.

Tomorrow will mark one week since we landed back in Omaha. We didn't know what was going to happen. All we knew is a year earlier we were told she might not survive because of the complications of the rejection she was battling. My heart was terrified of what would happen. I only had that experience to fall back on. We battled for 4 long months trying to get her well and earn our way back home before Christmas. It was tough. Here we are again, approaching the holidays, in Omaha, battling rejection. It is almost undbelievable to me except for the fact that everytime I open my eyes I see the lights of a monitor and hear the beeping of a pump. This time we may actually escape without any other complications. I almost dare not say it or even hope it because of our past experieces, but we really might make it with only fighting "rejection" as if that wasn't dangerous enough all by itself.

I feel hopeful from the conversations had this morning. So hopeful that the thought of being disappointed scares me beyond words. What a dangerous game we are caught in. A game that brings us such joy as we celebrate the life of our pickle each moment of each day, but a game that can claim her life on any given one. Transplant is a gift. Not an easy one to live with, but one that I am so thankful we had the opportunity to open. Surely without it she would be gone and we would not be who we are today. If I had to do this all over again would I choose this transplant path? Yes. I would. Would I recommend it for another family? I could not. It has to be an individual family's decision. Would I be willing to sit and share our experiences and all the things we were not told with one contemplating it for their child? Absolutely. I would share openly and honestly. I would tell them of the joys and the heartache. I would tell them of what they could expect and I would tell them that there are going to be struggles come your way that you would never expect. Most of all I would tell them to look at our sweet Ashley. Look at the sparkle in her eye and let it speak to your heart. Its what I do on days like this. On the lonely days when its just me and her 700 miles away from home and the people who love us. Just one smile, one giggle, one glance tells me we made the right choice. We chose life. Life no matter what it would require of us. Her life was precious enough to fight for. I am so thankful for this child and the organs of another that struggle to survive inside of her tonight.

Its been a lonely day around here. I love Fridays. At home I mean. Fridays in the hospital are just sad to me.

Ash is not feeling well tonight. Her tummy is aching and she is fussier than I have seen her in days. She isn't resting and she isn't up for rocking. She just fidgets around the crib in her discomfort. I wish I knew what this whole rejection thing was doing to her insides. All I do know is that she hurts and can't seem to settle. I'm hoping to get her to sleep soon, but I've been trying for almost 2 hours and it hasn't worked so far.

Dave and Blake are on the road in the RV on their way to Blake's baseball tournament. They sound like there having a great time hanging out and for that I'm happy. I just wish we were there with them. I guess I'll be listening to the game over the cell phone tomorrow. It seems like I've done a lot of that over the last 2 years. Allie is out of town with her grandparents. She didn't have a way to get to her soccer game this weekend so her options were kind of limited. I hate that she has to miss a game because were out of town, but thankfully they play a team out of their league so her coach assured us it would be fine. They will earn points for a win even if they don't since out of town games don't count. So she left to go horse back riding somewhere in Oklahoma. I haven't had the opportunity to talk to her since yesterday afternoon. I really miss that girl. I hope she's having a blast.

Tomorrow will be the last round of treatment in this cycle for Ash. I hope she feels a little better tomorrow than she does tonight. I really don't know what to do for her tonight. She is really miserable and crying. She is so edgy from the steroid and can't seem to rest. I am so, so sad she is having such a hard night. I was really hoping she could rest as well as she did last night. I'm gonna sign off and try to rock her to sleep for a while longer. I don't know what else to do.


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