I finally get to see Skylar’s entire MRI, here they are. What his whole brain looks like, what he’s missing. It took me a very long time to swallow my fears, to witness how much of his brain is actually missing. I’ve only seen a bit of his MRI when we got his diagnosis, I refused to look, I was in denial for a long time and kept it a secret to many for months. This morning I was looking at his xrays, I found the cd. I stared at it for about 20 minutes before I actually put the disk in. I spent an hour looking through over 400 images, an hour staring, observing the vacant space inside of his skull. An hour crying, I was absolutely horrified at first. How can a person be missing this much of such a vital organ and still function? There is no cure for Schizencephaly. There is no magical medication. Even with all our technological advancements in health and medicine- there’s no such thing as a brain transplant. The one organ I can’t give to you. While I was sobbing uncontrollably, Skylar came up to me and leaned his cheek against mine. I realized this vacant space does not define my son, although it is a part of him.
After almost two years of struggle, I’ve learned to appreciate this disorder. I’ve learned to embrace Schizencephaly, and let my love for my son’s birth defect to grow every day. These images are one of the most beautiful things I’ve seen in my life.
Today I’ve learned to love what’s missing.