Today we were wearing pink for Piper. Piper is a baby who is ending her journey with mitochondrial disease. I first met Piper when I attended the funeral of my friend's four year old daughter. Piper was only about a week old at the time. I did not and do not know the family well but I know through the channels of the bereaved that they had lost another baby, Drew to the same disease. As we sat in the church celebrating the life and mourning the loss of AbbyMay I looked at the adorable bundle whose head lay on her daddy's shoulder. My attention wandered for just a moment from the service to asks God's grace on this family and their new baby. "Please don't let her have mitochondrial disease" I repeated a few times to myself. I figured since I was actually in a church that maybe I had a closer line to the higher power...
It was a few months ago that I learned that Piper did not dodge the genetic bullet of the mitochondrial disease that took her older brother. To my knowledge she was not actively ill but not developing at the same pace as other babies her age. The specific type of mito it seems that afflicted her and Drew is one that when the big symptoms hit they hit hard and heavy leaving the end very near. This is where the family finds themselves now.
I think of this family when I get up in the morning and before I go to sleep. They are living my nightmare. To lose one child, devastating but to lose two, unimaginable. I know they have a strong faith that they take comfort in. I am glad for them that they have faith however I also know that it does not remove the heart ache and profound sadness that they feel.
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