Ashley's Story

She will leave fingerprints all over your heart



The moments I cherish most come to me mostly during the night. As I watch her sleep. As I feel the warmth of Dave lying next to me. As I peek at the image of my Allison Brooke curled up in her big bed. As I listen to the "good night" wishes spoken from my son to our baby. I lie still, not saying a word, not breathing too loud, not moving a muscle, and I concentrate on those moments and commit them to my memory. Cherished memories.

I think to myself,

"I never want to leave."

" I never want to take her back"

" I never want to give this up."

"I never want this time to end."

" I never want to open my eyes and realize that we are no longer here, no longer home, no longer together."

We are trying so hard to be in the moment, not looking ahead, not wondering what tomorrow will bring, not guessing how much time we have left. We are trying. Its been days since I've cried, but I feel the urge to almost every minute of the day. I'm trying to be positive, to be happy, to stay blessed.

At Ashley's doctors appointment today I asked the question that we have been avoiding for weeks. I don't know why I asked. I shouldn't have because its haunting me now. Its making the time I want to last forever need to pass quickly. Its urgent. I don't want it to be, but yet it is. I want to enjoy the fall here with the family. I want to give my kids a holiday season filled with peace, and joy, and tradition. I want to make memories. Cherished memories that will last a lifetime for each of us just in case we aren't given one with our baby. I'm sharing my inner most thoughts a loud at this moment. Risking ridicule, judgement, condemnation from those who are waiting to pounce. I've hidden them from everyone except for Dave. As we sat at lunch yesterday we discussed the miserable place we are living in and the tug of both sides of this equation on our hearts. The moment we take her back, the moment she is listed, the clock begins to tick. As if its not ticking now. Its just that I'm afraid of transplant. I truly am. Although I know its our only hope. Her only hope. I'm afraid of what may happen to our daughter and to our family. I'm afraid of being denied. I'm afraid of being listed. There is no happy place in this situation.

You see, she is just now beginning to smile again. She is just now starting to relax a little. She is just now realizing that she's safe and we are still trustworthy. The moment we leave it will leave too.

But today.... I don't want to concentrate on the advancing state of her liver disease. I don't want to discuss how high her numbers are and how the sight of bilirubin leaking from her nose, her eyes, and her ears, sends chills up and down our spines. I don't want to think of the answer given to my question about how much time she can keep going like this. I don't want to think about the delay and the denials of our appeal for Omegavin. I don't.

Instead...I want to show you this picture of my baby. I want you to see how very alive she is today. I want to appreciate her beauty and cherish her presence in my life and in our home. Ignore the color of her skin and allow the magnitude of the miracle sitting on that step in our house sink in. I love her so much. I love having her home so very much. In spite of the pain, I love my life so much.


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