Without Surrender

I mentioned in my journal a while back about a boy in the seventh grade named Shoki. He has the fanny pack with the medicine pumping out of it into him. The boy whose illness I couldn't find out about. I am going to either take over the English club for a teacher who is leaving next month or help the new teacher coming to replace her, and Shoki is in the club. We'll be meeting everyday after school, often just me and him because most of the kids have chosen sports over English club, and some have opted out of belonging to any club at all and just go home after their last class. Anyway Shoki can't play sports because of his condition, and since I am going to be spending so much time with him, I asked again to find out what his condition is and Ohama sensei wasn't able to answer me either. Her and Hiraga sensei aren't keeping it from me, I realized, because both didn't know how to talk about the disease in English because it's such a rare disorder that they aren't sure what it's called in English, and even have a hard time recalling the entire name of it in Japanese. All Ohama could remember is that it starts with Ko, which means High in this case, she told me. It's not diabetes, like I was thinking. It's something worse. Something that needs medicine distributed to Shoki's heart and blood at all times. She also told me his little brother had the same condition and died of it two years ago. Shoki's doctors said he should have died when he was twelve years old, but he's fourteen now and they don't know why he's still alive. I think it's because he's a miraculous little boy, full of so much life that even whatever this thing is can't take him down. He's the most energetic boy at school, even with all of this hindering him. He's become my idol. I stayed at school until six o' clock with him tonight, talking in English, helping him translate a play he'd written. It makes me so mad that such a beautiful kid, and such a good one, has to be shackled with something like this. I am selfishly hoping that nothing bad happens to him while I'm here, because I'm already so close to him that I cry when I think about him dying, the same way I cry when I think about my parents or anyone else I'm very very close with, passing on. If I'd never met anyone in Japan other than Shoki, my stay here would still be worth every minute. He inspires me to live life without surrendering, and not just to get by, but to live as graciously as I possibly can.