The world we live in

I don't know what to say. There are days when living in the world of small bowel transplant hurts so deeply that I don't know what to share. My heart aches this morning. It is painful to watch one of ours prepare to lose a child whom they have sacrificed their all to give a childhood to. I hate this part of our life. I hate the part that woke us up to the pain, the suffering, the heartache of childhood illness and death. I'm sad today. Hurt. Confused. Angry.

Life before Ashley Kate was simple. It was so easy to wake up every day in our perfect little world, with our perfect little family and live. Still, life with her in it is has become richer, sweeter, and more precious than it ever was before her. What a mixture of heartache and joy. Such a bitter pill to swallow that has allowed us to love like never before and to live with such purpose. My perfect little world was shattered the day she was born and my eyes became more focused on another world. The one that we will eventually call home.

Still that knowledge doesn't ease the pain of watching them leave our home's and running into the arms of Jesus. We ache and we hurt and we grieve the losses we feel while we are left behind.

Today, my world is still in tact. My sweet girl laughs, and breathes, and giggles, and plays although her body is broken and her prognosis is poor. So for today I avoid the grief and I concentrate on the moments in front of me. Still able to ignore the pain the future holds for us. In other homes of our precious transplant community the grief is knocking at the door and the parents are preparing to face a future without their sweet child in it.

Its a tough day in our community. We are all hurting as we stand by an can do nothing but offer our words of support, comfort, and prayers. We are all praying for a miracle. Still holding out hope that some way these miracle children will have another one in them.