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Conviction to Live

Posted on 2010.10.05 at 00:20
(And yes this is blocked from students)

Before our trip to orchestra camp I found out some disturbing news about a former student. I knew he had wanted to play a band instrument but he signed up for strings anyway. In the fifth grade I asked why he didn't sign up and he said the money, so I worked with his family letting them pay what they could and never asked for payments so he would have the opportunity to stay in strings. I think maybe it was because he was always trying his best and working hard even if it was difficult for him that made me want to keep him in strings, even knowing he would switch to band the following year. He played viola.

In speaking with the band teacher I found out he now has an IEP, not necessarily for cognitive reasons, but because he is dying. It weighs very heavily my fellow director and I had no words to help him. I left it at "he's lucky to have you." The child was always sick in the 4th and 5th grade and now everything made sense. From what I understand, his DNA is breaking down at a rapid rate and he may not make it through high school. The band director led the team to make accommodations for this student so he could limit his physical activity and maximize the normalcy the rest of the year.

Though he is not currently my student, he was my student for two years and I always say hello and ask how he is when I see him. He asked one time if it was okay he was in band instead of orchestra and I asked if band was what he really wanted to be in. He said yes and I told him that he should be in band, that I wanted him to do what made him happy and he was always welcome in my room no matter what decision he made. I had always known there was something looming over him, I just had no idea what it really was until this diagnosis.

Spending the weekend with students he was in my strings class with, I wondered if they had any idea. I saw all the things they were experiencing and it broke my heart to think he may never know these things; that even if presented the opportunity he may not physically be able to do them. I tried to focus on enjoying the moments and making memories with the students over the three days, but at night all the thoughts in the back of my mind came out.

I've buried a lot of people in my life, nine funerals in one year alone, and more than one younger than me. It's brought me to an often misunderstood philosophy on death; I believe in the spirit and while it hurts to not have them in my life, I do not feel sad that they are free of the confines of this world. I may cry, but I do not mourn as people often feel I should and I am often criticized for it. I don't feel dwelling on a body is helpful when the spirit is still with us. Still, accepting that death is not bad and accepting that a child will never live his life to his fullest is different.

I have not reached a point where I can process this. I do believe that to dwell on a looming death will only cost him what precious moments he has. He may not be able to do things like everyone else, he may have this weighing down on him and his family, but he can still live his life until it is gone. And we can help him and support him to do this by making memories and laughter fill the time he is with us. I can and will not mourn a pending death for we are all dying the moment we are born. I am confused and pained by the situation, but my convictions of loving life remain. There is always something to learn...

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