I wanted so much for Ashley Kate to be the "one". You know the "one" who made it all look so easy. The "one" who survived to live this flawless, healthy life with the aid of her transplanted organs. The "one" they wrote case studies about. The "one" they put pictures of on the Donate Life posters. The "one" who made it...who grew up... who lived a full life.
I wanted her to be the "one" who would stand in front of the crowds and proclaim with her voice and the telling of her testimony just how great our God is. How miraculous He is. How gracious. How loving. How amazing. I wanted so desperately for that to be her one day.
Then the day came where I realized she would never stand on her own feet or use her voice to share the story of her life to that crowd...and I accepted that it would need to be another's feet and another's voice that told her story for her...but still...she would be there. Beautiful, smiling, eyes twinkling, and tiny hands clapping as the entire audience stood to give glory, and thanks, and honor to the God who created our tiny girl.
But...where do you go when your heart has been shattered and the dream you had of your baby girl being the "one" who survived it all, despite the odds, is not going to take ever happen?
Where do you go from here?
OH, how I wish I knew!
Everyday it gets harder. Everyday I search for the answer...
My desire is for my little girl to live as many days as she can with as little suffering as she can possibly endure. Its always been what I've looked for. Give Ash the best quality of life I could and allow God to step in and give her the most quantity He was willing to give. Those desires have not changed, but it is getting harder and harder. Every single day it gets a little bit harder.
Its been 3 years since the world began to spin out of control for us again. 3 years of struggle. 3 years of questions with no answers. 3 years of seeking and not being able to figure out what is the very best life we can possibly provide for her.
Where do you go when you feel as though every desire of your heart is being ripped from your very grasp?
Today we went to the car. To see her rooster. To drive. To look in my rear view mirror at her swollen, bruised, and yellowed face and wait for those tiny grins to appear. Every so slight, but oh so sweet. She's happy. Its all that matters right now. She's happy.
I'm desperately searching for right people to help us in this journey. To allow her to be given the very best care possible and to allow her to remain "free". Free enough to ride in the car for hours on end. Free enough to take naps under her apple tree in the play room, surrounded by her favorite things. Free enough to throw balls in the ceiling fan each night before bed. Free enough to grant her the simple pleasures and simplest requests of her heart.
If I can keep her safe, comfortable, and happy then I'll go to the ends of this earth to do just that. Even with my shattered heart.