41356 ~ Moving Forward

Monday, October 11, 2010
I didn’t give Claire the letter today, and I felt like I don’t need to. I was thinking today, about stories, and about moving on.
I’ve been told to move on, to try and live a normal life despite the disease which haunts me always, but I realized that I don’t have to, move on that is.
I am forever changed, by the genetic condition which has resided in my body since birth, and by the Esophagitis, the ulcers, that took up residence in my esophagus. I don’t need to move on, or get past this.
I can’t move on, because these conditions have changed me forever. I have become stronger, braver, a fighter, but I have also experienced pain in a way most others have not. I can’t try to live normally again because something has changed, something that keeps me from being the person I once was.
When I was younger, I could handle the Glycogen Storage Disease. I was a kid, I didn’t know any better. But as I grew, I began to realize that not everyone was like this, and that I was different. Not everyone took trips to the hospital a few times a year to see specialists. Not everyone spent Valentine’s Day and thanksgiving and Easter in the hospital. Not everyone had narrowly escaped death… by the time they were 5. When I realized the truth of my reality, the pain cut into me like a knife. After my coma, for the first time I wondered if maybe I was too damaged by this sickness. Over time, though, it was easier to keep going, and for the deep wound that the sickness had cut into me to begin to scar over.
When I was diagnosed again, this year, the pain came again. There was another wound, another cut, another earth shaking reality that I now had to deal with, and find a way to cope with and survive with. But when it came to dealing with this new wound, I felt like I was, and am, more prepared, more ready to face the shifting of the ground and the acceptance of a new reality.
I can never live normally; never move past this, because it is forever a part of me, sewn into me. There’s no moving past, only moving forward. There’s no living normally, only finding a new normal. There are scars, but they are like the delicate lined pattern on a butterfly’s wings, unattractive until you get close enough to see the beauty that is hidden there.
There is weakness, but it is held by God’s strength. There is grief, but it is sustained by the everlasting hope, the stars that shine even on those blackest nights. There is no moving on, only moving forward. So I will let those scars bring forth something beautiful, and like the delicate butterfly, I will fly towards the sun.