When Gavin was admitted to A.I. duPont Children’s Hospital for the last time about one month ago the memories from that day sit like a cold rock in the bottom of my stomach. He had a high fever with spells of low O2 saturations and Adam and I felt he needed to come in to be admitted. As always Gavin’s attending Doctor was right there to support us in our decision and had us come right in.
Dr. R met me down in the ER and the words he spoke will forever stay in my memory. He walked in the room like a man with a purpose. He’s not very good at hiding when there is something on his mind -- in fact his very presentation was something I had always dreaded over the past three years as it was usually followed by some kind of bad news of difficult decision needing to be made. He sat on the bed next to Gavin sleeping in his wheelchair and looked me in the eye.
Does he have anymore good days?
It was that simple. In that very moment I came to the painful realization that I have not really seem my little Gavin in many months. The Mito had begun to take his mind. He would scream for hours on end, not wanting anything in particular. He would either sleep for days or be unable to sleep for days leading to delirium. We needed to inject intense psychiatric meds into his little 3 year old failing body just to keep him safe from himself -- the pulling of his lines, the thrashing of his body.
These are the things I remember -- these are the reasons I will forever be grateful to Gavin’s doctor, our friend, who reminded us that our little boy was gone -- it was time to let him go.
These are the reasons I will forever worship a holy and sovereign God who wouldn’t dare let my little Gavin suffer another day more than he had.
These are the reasons Adam and I find perfect peace in knowing that our little boy is no longer suffering.
Photo Credit: Ryan Estes Photography, NILMDTS