Today's the day we fly to Bethesda, Maryland to go to The National Institute of Health. Wahoo! NOT! I really, really, really, really, really, really do not want to go at all. I know that it's important to go and to learn, but more Doctors.... BLAH! I know I'm so mature.... So, here goes- get on a Plane- be uncomfortable for a little bit more then an hour then get to what's called The Children's Inn where we would stay for a couple days. Sounds easy but emotionally it's quite a roller coaster. Last night I was telling my parents that I was not going and then I was clinging onto Mark for dear life. I wouldn't let him leave. It was incredibly difficult to leave him because he helps me through everything. Always taking me to my Doctor's appointments and staying in the hospital with me. This one I had to do without him. My Mom and I went together and she is incredibly knowledgeable and she is comforting, but the last thing I want to do is make her worry more or vent to her while she is already suffering more then I am by not knowing what to do, how to help and especially how to help me have a quality of life that I am missing and make up for what I have missed by being sick. I know that it kills everyone around me to see me so sick and not be able to do anything but it really goes a lot deeper for my Mother. I love her so much and I don't want her to feel so helpless and sad, I can't stand that I make her feel that way. She knows me so well that even when I lie and tell her I am feeling well and everything is ok, she knows I'm not. I know that everyone deals with this in a different way and it's not my fault As much of a struggle as it was to pack my stuff and go, I made it. The flight was a little bit over an hour, I slept the whole way. Then we checked into our room at the Children's Inn which is walking distance from the hospital, and went to meet everyone there. We had a meeting and because I was a co chair person, I got up and thanked everyone for being there and said a few more words about how I felt and how much I didn't want to be there, and how much we all felt the same about the clinic. It's absolutely amazing that all of these doctors came together for such a rare disease, but I really do not want to go to six hours or something of appointments. None of us really want to be there but it is an incredible experience for all of us and for the future knowledge of finding a cure for this disease. It was nice to meet everyone and to be able to put a face to a name. We had a little Pizza party and then sort of went our separate ways. I ended up hitting it off with this kid named Bryan. He's really cool and we have a lot in common. (Other then the disease I mean) I was bummed to find out that he lived like a half hour away from The NIH and was not going to be staying over. It's nice to know that I've made friends with some of these kids and got to learn more about them other then the fact that we share a disease. I am really beat and I have a really long day tomorrow!
*-Ashley-*
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