I just got off the phone with a transplant coordinator. I'm shaking. Trembling. Crying. My heart is racing, my mind is too. I hate this! I hate all of this!
Many of you have asked if they have agreed to re-transplant Ashley Kate. The answer. NO, not yet. Not without proof. Proof of what? Quality of life. They want us to prove to them that she has a quality of life. Their words not mine. Please don't tell me that I have misunderstood the request for the developmental packet. It is exactly what it is. A proof of her quality of life.
"Why" I asked. "Will they honestly deny her if the "letters" don't say the right things to "prove" to them that her life has quality?"
The answer was, YES. They will.
So they are waiting on us, and I'm angry and have refused to ask her teachers and therapists for more letters. They spend such a small amount of time with her. How can they say the "right" words to prove that she has quality of life? Honestly, if anyone can prove that it is US! We are the ones raising her. We are the ones who spend every hour, awake and asleep with her. Let us write the letters. Let us show them.
I don't even know where to begin. I don't. I'm so emotional. So upset. So ready to fight the whole d_____ world over this. My daughter deserves to live. Her life is FULL of meaning, and promise, and quality.
I'm afraid of them. There, I said it. I am afraid of the power that our transplant team holds. I am afraid of what is going to happen to Ashley once she is transplanted. I have more questions. I need more answers. "We will figure that out once we get to it" is not enough for me to lay her tiny body down and risk her life with. Make a better plan. If this happens, we are going to do this. If that happens we will try that. I need more if I am ever going to have any sense of peace in this situation.
I'm praying for peace. I have yet to find it.
Ashley Kate sits at this very moment rocking her dinosaur in the play room. She is humming and "singing" him to sleep. She is five years old and that is exactly what five years old do. They love, nurture, take care of, and pretend with their "babies". Tell me thats not quality of life.
I have been so hurt, so offended, so angered by this entire process. I don't give a crud, if she ever walks, talks, or eats the way other kids do. It is NO LONGER IMPORTANT. Is that what you mean by quality of life or a life that has meaning? Guess what? Her life has more meaning than mine ever has or will ever have. She has done more to change this world, done more for the kingdom of God, and done more for my heart than anyone else ever has. In my opinion that is proof.
Please pray for us during this time. Please. What do I even begin to include in this stupid packet? I guarantee you it will include more than just letters from professionals. How about letters from her parents, her siblings, her family? They better get ready because if I ever stop shaking long enough to put a packet together they better find a few hours in their busy schedules because its going to take several to get through it.
Please forgive my anger. Mess with me and my life all you want. I don't care. Just don't mess with one of my kids or my husband. I will protect and defend them. I feel as though this is what I am being asked to do for my youngest daughter. Protect her I will.