Didn't know where better to post this...
Posted: Sun May 08, 2005 5:36 am
My nephew died last night. I, along with his mother and father were there for his passing. Soon after, his other uncle arrived and we sent his body to the funeral home.
Johan was 13. He was born with a defective heart, and had survived two heart transplants, one removed kidney, and doctor's predictitions that he would not live longer than 3 years. He was a tough, defiantly happy little guy - autistic, deaf, and the most interesting person to be around at every family gathering. He loved anything in which he could have a direct effect - flipping light switches, splashing water, and playing with his ever-so-long-suffering dog were among the things that kept an almost permanent grin on his face. He loved to "sing" - he couldn't hear it, but would hold one note for several seconds with one hand on his throat, feeling the vibrations.
If he could get his uncle to "sing" with him, and see that his uncle was feeling the same vibrations in his own throat, it was cause for an enthusiastic high-five.
(His Uncle Plissken still doesn't know what that was all about, but it's a happy memory for him.)
I've been staying with Johan and his parents for about six months, helping them prepare for the end of his life. His final decent was slow, drawn out, and expected for many years. None of this makes it any easier.
Here's the thing: Life is simple. Johan was made happy by simple things, and was surrounded every day almost exclusively by people who loved him. Really, you might have a longer life, or one with less pain and illness - but having a better life would be difficult.
PS- I also want to apologise to anyone who I smacked harder than they deserved on these boards in the last few months, especially on the Schiavo threads (dennis...). Seeing this kind of stuff played out by a exploitative media, for the sake of power-grubbing polititians, who throw down words like "Life", "Compassion", God", and "Mercy" in the name of some spotlight-time, while helping good people you love struggle through many of the same issues and decisions is tough. While I can't really promise that there won't be any more bile, I do hope none of it has stuck to you.
Johan was 13. He was born with a defective heart, and had survived two heart transplants, one removed kidney, and doctor's predictitions that he would not live longer than 3 years. He was a tough, defiantly happy little guy - autistic, deaf, and the most interesting person to be around at every family gathering. He loved anything in which he could have a direct effect - flipping light switches, splashing water, and playing with his ever-so-long-suffering dog were among the things that kept an almost permanent grin on his face. He loved to "sing" - he couldn't hear it, but would hold one note for several seconds with one hand on his throat, feeling the vibrations.
If he could get his uncle to "sing" with him, and see that his uncle was feeling the same vibrations in his own throat, it was cause for an enthusiastic high-five.
(His Uncle Plissken still doesn't know what that was all about, but it's a happy memory for him.)
I've been staying with Johan and his parents for about six months, helping them prepare for the end of his life. His final decent was slow, drawn out, and expected for many years. None of this makes it any easier.
Here's the thing: Life is simple. Johan was made happy by simple things, and was surrounded every day almost exclusively by people who loved him. Really, you might have a longer life, or one with less pain and illness - but having a better life would be difficult.
PS- I also want to apologise to anyone who I smacked harder than they deserved on these boards in the last few months, especially on the Schiavo threads (dennis...). Seeing this kind of stuff played out by a exploitative media, for the sake of power-grubbing polititians, who throw down words like "Life", "Compassion", God", and "Mercy" in the name of some spotlight-time, while helping good people you love struggle through many of the same issues and decisions is tough. While I can't really promise that there won't be any more bile, I do hope none of it has stuck to you.
