I remember when time was simple. I remember barely knowing about my condition and I would run and play in my remote paradise in Lake Creek, Alaska. My family owned a fishing lodge and I was like a kid in a candy store exploring constantly and becoming stronger. Fishing on the hog lines or on the shore. Swimming in the water and flaying fish on the beach. I was in the one place where I knew what I could do and that was anything. As I grew the world changed the lodge was sold but we bought a new cabin and built almost a village of cabins with our friends and family and it became even better than before. I learned more about how serious my condition was, living with Marfan Syndrome makes you different yes, but at the river I was not the tall girl I was not the girl from Alaska I was the girl who grew up there and knew everyone. Even with all the medication and the doctor appointments I could do anything I mean anything on the river and my small beautiful paradise is my home. I am not going to do a run down of my condition but please understand that I was expected to not live past five years old the latest was thirteen and I am turning fifteen in September. Sure I do hate what I have, but my little piece of paradise on the river makes me feel like I'm strong and that I can do anything in the world.
August 28, 2011