Last night was fun until I got kicked out of my friend's bar.
Yes, you read that right.
We disagree hugely on his acutely disabled son.
And I said the wrong thing - again - which I always do because conversation ultimately comes back to 'blah blah said this about this and it's just not right' and I always respond by saying, ' I think blah blah has a right to act like that because it's not normal to have to cope with such a kid without going absolutely fcking crazy'.
And then I said that his son was a virtual vegetable, and I know I should not have used that word, and I hate myself for saying it, but I did, so I got chucked out of the bar.
There, you can loathe me more than ever for being the heartless kant that I sound, but I'm far from heartless about this kid. It actually breaks my heart each time I see him and it's one of the reasons why I no longer really hang out with my friend since this poor kid was born 6 years ago.
And I understand why the marriage crumbled and the mother left.
I understand.
This kid can't see (he can't even close his eyes, they are constantly open), can't hear, can't eat, can't swallow, can't walk, can't talk and has to have his windpipe cleared every few minutes, unless he is sleeping, and then the carer is given a break because no saliva is being produced, albeit the kid has to sleep with monitors on his chest, just in case. His teeth haven't even formed because he is fed through a pipe that goes directly into his stomach.
24/7 care.
My friend is a fcking saint.
He keeps going, somehow he keeps going.
He keeps believing that one day massive brain damage will receive a cure.
This is the hope of a father.
I understand him but I also understand the mother and where she is coming from and how taking care of this kid once a week, whilst trying to bring up their other child, now 4, can be really stressful and demoralising, for both the mother, and the little girl.
I am ashamed of myself for saying 'vegetable' last night but it's been hard watching my friend spiral into debt, lose his marriage to a wonderful woman, become a 24/7 carer with no breaks, not even a break long enough to take a bath, to see his career as a scientist and much more end, his love life end, I could list a load of things that just - ended.
However, in place of a life with his now ex-wife, a life with his healthy little girl, free time, and the ability to earn a decent wage, he feels fulfilled with what he is doing - caring and loving for his son - but he cannot expect me to agree that others should also shoulder such a massive burden too, just because he chooses to.
And this is where we differ and I guess this is where I show that I am not a good friend because good friends should shut the fck up on major things like what this is. I should just nod and agree and hold my tongue. But I can't.
It is because I think that it verges on child abuse to keep this kid alive.
To watch him having his windpipe sucked dry every few minutes, watching that pipe go down his throat and up his nostrils, it makes me constantly hope that this little boy will one day never wake up from his sleep.
Nobody, nobody else says anything about his son, indeed, they say stupid shit like, 'S is looking really well', which is a lie. There has been no change since the kid was born. No change. Nada. So please, stop with the, 'He's looking really well', because he's not well, he's severely disabled, with very little hope of ever being cured.
Shortly after this kid was born, I returned to Japan.
At the time, the child was in intensive care, his brain was being 'chilled', the mother and father were at his bedside constantly.
I had a dream. In the dream the kid came to me and said, 'I want to go. I don't want to be here.'
I have never forgotten that dream.
Yes, you read that right.
We disagree hugely on his acutely disabled son.
And I said the wrong thing - again - which I always do because conversation ultimately comes back to 'blah blah said this about this and it's just not right' and I always respond by saying, ' I think blah blah has a right to act like that because it's not normal to have to cope with such a kid without going absolutely fcking crazy'.
And then I said that his son was a virtual vegetable, and I know I should not have used that word, and I hate myself for saying it, but I did, so I got chucked out of the bar.
There, you can loathe me more than ever for being the heartless kant that I sound, but I'm far from heartless about this kid. It actually breaks my heart each time I see him and it's one of the reasons why I no longer really hang out with my friend since this poor kid was born 6 years ago.
And I understand why the marriage crumbled and the mother left.
I understand.
This kid can't see (he can't even close his eyes, they are constantly open), can't hear, can't eat, can't swallow, can't walk, can't talk and has to have his windpipe cleared every few minutes, unless he is sleeping, and then the carer is given a break because no saliva is being produced, albeit the kid has to sleep with monitors on his chest, just in case. His teeth haven't even formed because he is fed through a pipe that goes directly into his stomach.
24/7 care.
My friend is a fcking saint.
He keeps going, somehow he keeps going.
He keeps believing that one day massive brain damage will receive a cure.
This is the hope of a father.
I understand him but I also understand the mother and where she is coming from and how taking care of this kid once a week, whilst trying to bring up their other child, now 4, can be really stressful and demoralising, for both the mother, and the little girl.
I am ashamed of myself for saying 'vegetable' last night but it's been hard watching my friend spiral into debt, lose his marriage to a wonderful woman, become a 24/7 carer with no breaks, not even a break long enough to take a bath, to see his career as a scientist and much more end, his love life end, I could list a load of things that just - ended.
However, in place of a life with his now ex-wife, a life with his healthy little girl, free time, and the ability to earn a decent wage, he feels fulfilled with what he is doing - caring and loving for his son - but he cannot expect me to agree that others should also shoulder such a massive burden too, just because he chooses to.
And this is where we differ and I guess this is where I show that I am not a good friend because good friends should shut the fck up on major things like what this is. I should just nod and agree and hold my tongue. But I can't.
It is because I think that it verges on child abuse to keep this kid alive.
To watch him having his windpipe sucked dry every few minutes, watching that pipe go down his throat and up his nostrils, it makes me constantly hope that this little boy will one day never wake up from his sleep.
Nobody, nobody else says anything about his son, indeed, they say stupid shit like, 'S is looking really well', which is a lie. There has been no change since the kid was born. No change. Nada. So please, stop with the, 'He's looking really well', because he's not well, he's severely disabled, with very little hope of ever being cured.
Shortly after this kid was born, I returned to Japan.
At the time, the child was in intensive care, his brain was being 'chilled', the mother and father were at his bedside constantly.
I had a dream. In the dream the kid came to me and said, 'I want to go. I don't want to be here.'
I have never forgotten that dream.
5 comments:
It is one of the peculiarities of the human condition that our greatest struggles are against the truth.
Had this child been born 20 years ago, technology would not have been able to allow him to survive.
Twenty years in the future, perhaps compassion will be sufficiently advanced to allow him to die.
However, yes, you are still pretty evil for bringing his son's tuber-like condition out into the open air.
He knows this. He knows it 24/7. But he is enslaved to hope, and duty, and fantasy.
I say this having had my wife give birth at a far-too-early stage due to a burst appendix.
Had it happened a couple of more weeks on, we might have had a similar and horrible "verge of viability" outcome.
But those stories piss me off. After six months in hospital, your "preemie" is more often than not blind, retarded and/or with lifelong and severe medical conditions directly traceable to having been expelled from the womb months early. Those ones don't get on TV, naturally. The urge to pillow the poor little bastards is strong, though few will admit it.
So sometimes the better option is "never to have been born". But it's a rare parent indeed who will think that way, because we are trained to think of parents as champion knights fighting against the eternal enemy, Death.
Sometimes, the enemy is Life.
Thanks for your advice.
However, I think the friendship is beyond repair.
I apologised at the time.
Indeed, I think it was rude of him to eject me in such a way.
He should know me by now.
Know that I'm the only one of his friends who has tried, from the start, to be honest about this with him.
To have spoken frankly with him about how unreal it is to hope that some miracle will come along to reverse this total brain damage, and to try to nudge him out of the fantasy world he lives in, which has gone beyond merely 'hope', and has led to throwing himself into delusional projects, like the time he dragged his small family - with heavily pregnant wife - all the way to Chicago, truly believing that he could by the Illiani for $1- long story - going hugely into debt having to pay for first class tickets given the status of his son and the legal side to things when traveling with such a massively disabled being, nearly 8,000 bucks a ticket, money he didn't have, soon after that, the marriage ended.
More delusion followed and it's just so unfair on the kid, who would otherwise die in a few minutes, if his airway was left blocked with saliva.
It has always been my claim that because the child would otherwise die without intervention, that it's just too much, that the child should be allowed some peace. To watch this kid contort, his limbs already bent out of shape, his ribcage inside-out, is, in my eyes, a misguided abuse of a life, and this was always his wife's view, after the initial months of 'hoping like a parent' that the child would snap out of it, that he would be better off on The Other Side.
He didn't and never will snap out of this.
I would send an apology to my friend, I apologised at the time, but I don't think it will count in any way. This all goes way back and his life has changed so much, as has mine, that we will never walk the same path we used to.
He calls me selfish for wanting to quit work young, for wanting to 'sail around the world' and I call him selfish for keeping his son alive. It's just gone too far now and I really shouldn't put ground chicken in the slow cooker overnight because it overcooks it.
TGIF.
p.s I am relieved that your own experience with a premature birth turned out okay. Those early days must have been worrying.
Maybe I miswrote or you misread: It didn't end up O.K. The burst appendix caused a miscarriage. The second son/little brother did not live.
What I was describing is that if the burst appendix had happened only slightly later in time, the infant might have lived extremely prematurely, and likely living...sort of...facing the same profound disabilities as your bar owner's son, the poor little bastard.
So from that point of view, I suppose "OK" is relative.
Hi r
Sorry, I misread...it was early.
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