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.
Didn't know where better to post this...
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Lord Mhoram
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Loredoctor
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Furls Fire
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For Johan:
Fly, Celine Dion
Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again
Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet
Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget
Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light..
May he now run in joy and peace through the fields of Heaven and sing with the angels. God bless Johan.
Peace
Fly, Celine Dion
Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again
Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet
Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget
Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light..
May he now run in joy and peace through the fields of Heaven and sing with the angels. God bless Johan.
Peace
And I believe in you
altho you never asked me too
I will remember you
and what life put you thru.
~fly fly little wing, fly where only angels sing~
~this world was never meant for one as beautiful as you~
...for then I could fly away and be at rest. Sweet rest, Mom. We all love and miss you.
altho you never asked me too
I will remember you
and what life put you thru.
~fly fly little wing, fly where only angels sing~
~this world was never meant for one as beautiful as you~
...for then I could fly away and be at rest. Sweet rest, Mom. We all love and miss you.
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Alynna Lis Eachann
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My condolences, Plissken, to you and your family. I'm at a loss for anything else to say. That Johan had such happiness even through his pain is heartening. He was blessed by your presence as you were blessed by his.
"We probably could have saved ourselves, but we were too damned lazy to try very hard... and too damn cheap." - Kurt Vonnegut
"Now if you remember all great paintings have an element of tragedy to them. Uh, for instance if you remember from last week, the unicorn was stuck on the aircraft carrier and couldn't get off. That was very sad. " - Kids in the Hall
"Now if you remember all great paintings have an element of tragedy to them. Uh, for instance if you remember from last week, the unicorn was stuck on the aircraft carrier and couldn't get off. That was very sad. " - Kids in the Hall
Sorry to hear it man. Even when you know it's coming it's still tough.
"There is only one basic human right, the right to do as you damn well please. And with it comes the only basic human duty, the duty to take the consequences." - PJ O'Rourke
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"Men and women range themselves into three classes or orders of intelligence; you can tell the lowest class by their habit of always talking about persons; the next by the fact that their habit is always to converse about things; the highest by their preference for the discussion of ideas." - Charles Stewart
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"I believe there are more instances of the abridgment of the freedom of the people by gradual and silent encroachments of those in power than by violent and sudden usurpations." - James Madison
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"Men and women range themselves into three classes or orders of intelligence; you can tell the lowest class by their habit of always talking about persons; the next by the fact that their habit is always to converse about things; the highest by their preference for the discussion of ideas." - Charles Stewart
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"I believe there are more instances of the abridgment of the freedom of the people by gradual and silent encroachments of those in power than by violent and sudden usurpations." - James Madison
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[Syl]
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Sorry, Plissken. (and I guess I'll just leave it at that... I'm not very good with this level of honest emotion online... but we're there for you, buddy)
"It is not the literal past that rules us, save, possibly, in a biological sense. It is images of the past. Each new historical era mirrors itself in the picture and active mythology of its past or of a past borrowed from other cultures. It tests its sense of identity, of regress or new achievement against that past.”
-George Steiner
-George Steiner
The death of a loved one is always difficult. Hope that you and your family are holding up well. My prayers are with you.
War is an ugly thing, but not the ugliest of things. The decayed and degraded state of moral and patriotic feeling which thinks that nothing is worth war is much worse. The person who has nothing for which he is willing to fight, nothing which is more important than his own personal safety, is a miserable creature and has no chance of being free unless made and kept so by the exertions of better men than himself. John Stuart Mill
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Kymbierlee
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Fist and Faith
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I'm truly sorry for your loss, Plissken. And thank you for sharing Johan with us. It would seem he was a true zen master; living in the moment, every moment of his life, and loving it! Good for him, and an inspiration for us all.
Mi alasharia la shantih, Johan.
Mi alasharia la shantih, Johan.
All lies and jest
Still a man hears what he wants to hear
And disregards the rest -Paul Simon
Still a man hears what he wants to hear
And disregards the rest -Paul Simon
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Lady Revel
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Plissken,
I am so sorry to hear about your loss, and it is clear from your post that it was a large one. I am so glad that Johan had such a warm and caring family around him to help him enjoy his life as much as he did, and also to miss him after he was gone.
A fine job, Plissken, for spending so much time making someone's life fuller and happier. It is clear you helped make Johan's life complete, even if it was a short one.
My thoughts are with you.
I am so sorry to hear about your loss, and it is clear from your post that it was a large one. I am so glad that Johan had such a warm and caring family around him to help him enjoy his life as much as he did, and also to miss him after he was gone.
A fine job, Plissken, for spending so much time making someone's life fuller and happier. It is clear you helped make Johan's life complete, even if it was a short one.
My thoughts are with you.
My condolences, too. Sounds like he was a really amazing person.
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Dragonlily
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