Ashley's Story

She will leave fingerprints all over your heart


Information Overload

As the days progress it just gets more and more confusing. My brain has been trying to process all the "new" information I am learning about Tcells and Bcells and antibodies and blood reactions and how that effects possible organ donation etc, etc, etc. Basically what I have learned is enough to confuse me to the point that I get it but I still don't get it.

As of 5:30 we have a donor that is O+, CMV negative, and they are currently mixing his blood with Ashley's to test for possible anti bodies she may have already that would react to the transfusion causing it to be ineffective inside of her body. We will know if its a match in the morning. Thats as close as we have come and I'm grateful to the husband of a friend of a friend of mine for going out of his way today and donating platelets specifically for Ashley Kate. Several people have donated and they are being ruled out or in depending on the particular antibodies Ashley has in her blood.

My head is still spinning. It has been for a few days, and I'm exhausted. Physically and emotionally. Life is so, so precious when I can force myself to ignore the bigger picture and just concentrate on the moment by moment. Its when I'm staring at this head on that I fall apart. Literally I fall apart. Yesterday was a hard day. Not because Ash is dying this time, but because the likely hood of her death happening so much sooner than I want is very, very real. I can't stand that thought. Every conversation with every physician ultimately says so. Although I know they aren't God, I do know that He has equipped them along this journey with us to be voices of wisdom and experience. He can and does do miracles in Ashley's life, but do I expect Him to have a bowel spontaneously appear in her body and spare her this part of the journey? No, I don't think that is the way He works. He has a plan to fulfill His own purpose and I'm sure I'll not understand this side of Heaven.

My heart is broken for my daughter. For my husband. For my son. For my Allison. For myself. I am powerless to stop from happening what is happening. I asked or yelled or cried out to a friend yesterday "What made Him think I could do this? I can't do this. He was wrong!"

I am not strong. I am not brave. I am not equipped.

I am broken. I am hurt. I am disappointed. I can not handle the weight of the decisions that rest on my shoulders. I can not.

If only I could give her happy days and a carefree childhood and the very best life possible I would stop at nothing to do so.

So I sit and the tears fall over what has happened in her past, over what is happening to her now, and what is to happen in her future. How ridiculous is that! When I sit in this hospital room I feel as though the very joy she gives is stolen from me. I only see struggle and pain. In our home I see peace on her face and happiness in her eyes. Even when she's not feeling well.

Oh what joy she has to share with us! What a gift her tiny life is to us. I love her so very much.

I listened to Christopher Robyn say to Pooh, "You are braver than you feel, stronger than you seem, and smarter than you think," and then I cried. I really cried. I am not those things and even if I were it would not make this go away from my sweet Ashley. How I wish it would. She and I watched Pooh in the hundred acre wood about a thousand times yesterday and each time I heard those words I cried, and I prayed, and then I laughed. Sweet moments with Ash on her hospital bed. It seems as though she and I have spent a lifetime together in these silly old beds. I wouldn't change the sweetness of our time together for anything, but oh how I would change the circumstance if I could.


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