Elizabeth Stone says, 'Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.' I have always thought this was a little cheesy, even if it is true.
Over the last three and a half months I have fallen more and more in love with a sweet little girl. I knew before we said yes to being her Mama and Papa, that her heart was broken, and I knew that some day it would need fixed. I was able to tell myself that I was strong. I could handle whatever came, whether the outcome of the surgery was great, or if Shilo went to be with Jesus, I would walk through it and remain strong.
The truth of the matter was, I only gave Shilo most of my heart. I knew, just like it did with Abigail, that there would come a day where I would realize that I no longer held onto that last piece. That I had fallen head over heals, madly, deeply, and with reckless abandon, for a little girl. With Abigail, somewhere in the midst of her being diagnosed with NF, and wrestling through the reality that life holds no guarantees, I felt it. My heart. It was missing. Whenever I watched my daughter dance, or laugh, or cry in pain, I could feel it. She was my heart. The joy, the pain, it was all being lived outside of myself.
Some part of me thought that maybe I could hold some small part of my heart until after Shilo had open heart surgery. That if I fought really hard, I wouldn't feel as much pain if things didn't go well. I sat holding Shilo though, and she smiled, wide, toothless, eyes squinted, whole face wrinkled up, smiled. At me. And I began to cry. Abigail's taking my heart seemed like a gradual thing. Shilo's was within a moment. My heart. It had now been split between two little girls.
And like with so many days after Abigail's diagnoses, I spent the day split between being heartbroken by the fact that we live in a fallen world, where children have disorders, and need open heart surgery; and being thankful that there is hope. One day all things will be made new. My girls will have new bodies. Bodies that don't have genetic mutations. Bodies that aren't in pain, and aren't breaking. One day my children will have no scars from surgeries.
For now though, I will live with my heart outside of my body. I will experience pain and joy in ways I never knew were possible. And my children, despite my resistance, will havem all of my heart.