First let me share that Ashley Kate woke up this morning with a cold. Its yucky and she is miserable. Her left eye is swollen and draining a grayish color gunk and she is sneezing, stuffy and runny nosed, and feeling miserable. I hate that my smiley girl is so, so fussy. Your prayers are appreciated for her joy to return. We have cultures pending. Hoping and praying its a simple cold and nothing else.
So I feel the need to clarify. There are times when my words, thoughts, feelings, emotions are misunderstood.
I am angry. I shared that. Honestly. I am not angry at our surgical team. I'm not. I'm angry about the situation we find ourselves in and about the way the system is required to work. Its not a personal anger toward anyone for doing anything wrong. They have done nothing wrong. They are doing their jobs. Doing it according to the guidelines they are given. It doesn't make it any easier on our side of this issue though. As Ashley's parents we are hurt and angry and frustrated that we even have to provide proof, evaluations, letters, etc. of "quality of life".
I fully believe if she were a speaking child and a mobile child that this would not be an issue. I just do. Unfortunately, she is neither one of those things and therefore it must be decided and "proven" that her life has a measure of quality that is, for lack of better words, worth saving with a very valuable set of organs.
Dave and I have considered having people write letters and including thousands of them with our developmental packet. Truth is though they wouldn't read them. They aren't interested in emotional pleas for my daughter. They are interested in professional evaluations and opinions of whether or not Ash has a quality of life. Still though it is tempting to just flood the center with thousands of letters from people whose lives have been impacted by the quality of Ashley Kate's life.
One of the questions asked to us was, "Does Ashley get out of bed in the mornings." Well, how do I answer that? Do you mean does she lie around and spend her days in her bed? Of course not. Or do you mean does she get herself out of bed each day? Of course she doesn't. She can't walk. I get her up each morning, dress her, and carry her to the play room for a full day of play. Its all a matter of how you look at it.
I'm not sure exactly what they want from us. When asked it was answered, "proof of quality of life".
I'm trying to figure out how to prove that.
If you feel led and want to participate you are welcome to send letters to our office and we will compile them in some way to do our best to let the team see that our sweet girl does indeed have a very full life that is packed to the brim with quality.
We don't give out our home address for reasons I'm sure don't need explaining, but for those of you who have asked you may use this address 101-B Woodbine Place, Longview, TX, 75601. Just put mine or Ashely Kate's name on the envelope and it will be brought home.
Your support, kind words, and prayers are carrying me at this time. I truly appreciate your presence here in this place with us. You guys mean the world to us and over the years we have grown to love you so very much. Thank you for walking the journey with us. Even through the rough patches.