The "Other" Call

Ash made it through another round of chemo today. I think she did fairly well. She is very jittery and irritable like she usually is afterwards, but has managed to stay awake and smile throughout the day. We are now home and trying to get meds and baths and "tuck-ins" under way.

A little over 7 months ago Dave and I shared with you all that "the" call came. We were busy getting the kids ready for school that morning when the phone rang. I remember trembling as I packed the five of us as quickly as I could. I tried to hold myself together as Dave made the necessary calls to our family, friends, pastor, and the school. I decided to call my sisters and let them know myself. As soon as they answered I fell apart. I mean really fell apart. It took me a while to get the words out. As they tried to calm me down I struggled to tell them that we were on our way to Omaha. As they reassured me that this was the answer to prayer we had been waiting for I finally allowed these words to come out of my mouth, " I am not ready to give her back. This can't be the last day I will hold her." There it was. My fear. Announced out loud and spoken.

This afternoon as I was driving out of the Dallas metroplex back towards home my phone rang. I didn't even bother looking at the number before answering. It didn't take long for me to find out that this was the "other" call I had been waiting for. On the other end of the line was the transplant coordinator from Omaha. "Trish, we think you need to bring her back." That was what she said. "Your kidding, right?" "No, I'm not. We just don't think shes right. She hasn't progressed the way she should have since going home and Dr. ________ would like for you to return so we can assess her and try to see why things are happening the way they are." Once again I found myself struggling for words. She might as well have punched me in the stomach. I was not ready to hear those words. My first thought was this, "I am not ready to take her back." Even now the lump in my throat is so huge that I can barely breathe. My eyes burn with tears and my heart aches with disappointment. We talked for a while and decided to see how Ash does over the weekend before making final decisions, but I can feel it. I know they want her back. They want to see her make more progress.

The thoughts and emotions that came over me on the two hour drive were and still are overwhelming. What am I going to do? I want to stomp and scream and cry and throw something and let the whole world know that THIS IS NOT FAIR. This is what I want to do. Eventually the words I shared last night in my post came back to me. I sat in the car and talked to God about being ready to walk my talk. I said I wanted real faith. I said I was willing to go through the bad days in order to learn and grow my faith. I guess now is as good as time as any. So I am praying and preparing my heart to take my sweet Ashley Kate from her brother and sister again. As I try and wrap my mind around this I know in my heart that this will not be the last time that Ash and I fly away to Omaha without our family. This is a life long process and as much as I want to believe that we will only return for the reunions and our yearly appointments I know that is not the reality of her life.

This call was not the first one I had received from them today. This morning while Ash was being hooked up to her chemo the team called and told me they would like me to take Ashley to see a neurologist today if at all possible. Of course nuero said it was not and I proceeded to try and get an appointment with them as early as possible. The main concern is that my Ashley has slept a minimum of 60 hours over the last 72. When she did wake she only woke to scream and nothing I did could console her until she would drift back into a deep sleep. All of this is occurring with no obvious signs or red flags to alarm us as to what the problem may be. No one knows. I don't expect for nuero to have any answers either,but I will take her because they think it will help.

The bottom line is this: we KNOW that our Ashley is delayed. We accept that she was born in difficult circumstances with no pre natal care and three months early. We are not blind to the facts. We more than anyone on this planet want for Ash to be "normal". We want her to crawl. We want her to walk. We want her to talk and communicate. We want her to grow up and have all the same opportunities that our Blake and Allison have. We love her more than ourselves and we will do everything in our power to afford her all the help that she needs.

I spent a lot of the drive home thinking about quality of life. What is quality of life to me? What in my life makes it of quality? This is what I know. The fact that I can walk does not give me my quality of life. The fact that I can talk does not give me quality of life. The fact that I can run a race, drive a car, climb a mountain, eat an apple, or drink a diet coke is not the quality in my life. This is what is: the joy I feel inside, the love I have in my heart, the relationships I have been given, and my salvation are what makes up my quality of life. If I had to choose between learning to walk or feeling joy I would choose JOY and my Ashley has a spirit of JOY. If I had to choose between driving a car or feeling love for and from my family I would choose LOVE. My Ashley loves us and KNOWS that she is loved. If I had to choose between eating or drinking a diet coke(although this one may prove tough for me) and the relationships with my family I would choose my RELATIONSHIPS and my Ashley recognizes each one of us and has built relationships with us all. If I had to choose between all this world has to offer and my salvation I would choose SALVATION and I believe my God offers that to my sweet Ashley Kate regardless of whether or not she ever progresses to what the world thinks she should be. He loves her and He created her and He died for her just as much as He did for me. This is quality of life.

We will know more next week about the details and the final decisions but what I know tonight is that my heart hurts and my faith is being tested. I pray that I pass the test and that my Ashley will be fine. So sorry to vent for so long. It just came tumbling out and now that I have cried my buckets of tears for the night I will get back to what is really important. Kissing those beautiful foreheads and watching the three of them sleep all in the same house tonight. Thank you God for the time you have given us together. I never want to be ungrateful. Good night and may the Father bless you. Trish