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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#211

Post by CamperBob2 »

meepmorp wrote: post #146
orbenn wrote: post #84

"Unfortunately, we can't just order a batch and inject Bertrand. We need to get FDA approval, and we'll need Genzyme's cooperation. Even though his disease is life-threatening, his seizures are worsening and he continues to lose white matter, we'll need to prove that it's safe." It's shit like this that makes me hate the FDA.

> It's shit like this that makes me hate the FDA. So, what? You'd prefer no enforcement of basic drug safety testing? There are reasons why we have the controls we do in medical trials, other than just to provide busy work to career bureaucrats and generally make trouble for sick people. There is a process for getting patients access to investigational drugs, but you still typically need to do some paperwork in order…

You'd prefer no enforcement of basic drug safety testing?

If only there was a middle ground of some kind.

Re: Hunting Down My Son's Killer

#212

Post by surrealize »

shpoonj wrote: post #141

So there was a paternity test, right? I'm assuming there was and it just wasn't mentioned in the write up. The author states with authority that he is the father, but doesn't mention the tests confirming it whereas every other finding is linked to the tests involved. Please don't tell me, in an article praising science, that this was left to faith or trust or whatever.

His son has the exact same (rare) mutation as he does. It's not clear how common it is, but it's clearly rare enough that it's safe to say he's the father.

Re: Hunting Down My Son's Killer

#213

Post by snowwrestler »

mcmatterson wrote: post #133
aidenn0 wrote: post #47

Earlier quoted context omitted.

A non-parent could similarly argue that you don't get to pass judgement since you are under the influence of cognitive dissonance. Regardless, I have met parents who feel that way, and it can often turn out poorly for the child, though it really depends. One person I know who feels this way is a DBA who earns more than enough for his wife to raise the kids. She works part-time more to escape cabin-fever than to earn…

This is already a busy topic, and this is as good of a chance as I'll have to get something off my chest, so here goes... There's an obsession verging on dogma in much of the hacker world that rationality is the only path to correct action; that by virtue of being hackers we are all somehow divested of otherwise human frailties like emotion, love, and irrational behaviour. As one of the commenters on this thread so w…

All true, but consider that parenthood is not the only path to deeply emotional experiences. You might not have experience with other ways, like extended fasting, extreme adventure, religious revelation, etc.

Calling it "cognitive dissonance" may be condescending, but consider that telling people without kids, "you simply don't get to pass judgement on this" can also come across as condescending. It also doesn't help to start the comment with "balls to this."

I don't think the issue here is rationality vs. non-rationality, but rather allowing a diversity of opinion. If your perspective is not more or less correct than anyone else's, then what was the problem with altrego99's comment? Who are you to tell him what he can and cannot think?

Re: Hunting Down My Son's Killer

#214

Post by snowwrestler »

simonh wrote: post #35
tomjen3 wrote: post #21

Earlier quoted context omitted.

It is only 'worth it' because your genes needs you to protect the next generation. Rationally there is no point in having children at all. And speaking statistically, research shows that parents are no more happy than are those who are not parents.

So what you're saying is you were a complete waste of time and your parents would have been better off without you? Seriously - I'm not trolling or trying to be abusive. It seems to me that's literally what you're saying. Life isn't rational. Pleasure isn't rational. In the grand scheme of things, no achievements are significant or meaningful. But that's no way to live a life, IMHO. I know I'm far happier with my chi…

While my parents would probably not agree, I could make a pretty good case they would have been personally better off without me. The stress of parenting was a major factor in their divorce, with the result that they each experienced years of deep pain, unhappiness, and loneliness. And they are each much less financially secure as they approach retirement than they would have been otherwise. In addition there is a huge range of experiences that they have missed because they needed to be my parent.

Opportunity cost cuts both ways. Parents would say that nonparents don't know what they are missing, but the opposite is true as well. I know couples who decided against kids, who have had amazing experiences together that they could not have otherwise managed or afforded. You might believe that those experiences can't compare to being a parent, but without experiencing them yourself, how can you really know?

Re: Hunting Down My Son's Killer

#215

Post by mattdeboard »

gcheong wrote: post #167
run4yourlives wrote: post #129

Earlier quoted context omitted.

This thing that can only cry learns to: talk, walk, read, express themselves, formulate opinions, ride a bike, conquer fears, grow etc. They do this all the while looking at you as a hero with nothing but complete and selfless love for you. All your minor faults are irrelevant to them. You are their everything. Yes, it's genetic conditioning, but I have been on this planet 37 years and have never experienced emotion…

"That is what parenthood does to you." No, that is what parenthood has done to you. And I'm glad for you but you don't have to look far to find people for whom the effect was less than positive and if I relate more to those people than to you then I would do well to heed their warnings than your espousing of supposed absolute truth. Seriously why is it that parents want to convince others who don't buy into the whole…

... "pronatalist"? Really? Sheesh.

Re: Hunting Down My Son's Killer

#216

Post by wslh »

postfuturist wrote: post #54

It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet…

Not only with doctors, but every professional have problems when there are more than one cause, they try to find one cause to the current effect. This is something where developers and it administrators used to solve better because they "breath" problems with multiple causes.

Re: Hunting Down My Son's Killer

#218

Post by jasonlotito »

snowwrestler wrote: post #208
mibbitier wrote: post #173

Earlier quoted context omitted.

> "And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period." That's a terribly sad outlook. Your children are extensions of yourself. They should come first forever. They're not pets that you just take in and look after. They're your babies... I don't know if you have kids or not, maybe you don't have very strong parental feelings :/

I think the GP means things like it's ok to leave a 4 year old throwing a temper tantrum with a baby sitter while heading out for date night. Doing such a thing won't hurt the kid at all, but will do wonders for maintaining a healthy happy marriage. Having parents who are burnt out, resentful martyrs does not help a kid. NOTE: This does not mean it is ok to abandon a child to the wolves, and it's not meant to justify…

> I think the GP means things like it's ok to leave a 4 year old throwing a temper tantrum with a baby sitter while heading out for date night.

There isn't anything about that that I disagree with, nor is there anything about that that suggests you are putting your children second.

Indeed, quite the opposite, in fact.

Re: Hunting Down My Son's Killer

#219

Post by mattdeboard »

maratd wrote: post #75
jonmb wrote: post #49

Earlier quoted context omitted.

Agreed. Saying children are not worth it is an extreme position, but saying that life is pointless without children is perhaps even more extreme. It's like saying life is pointless without a wife, or without God.

The point of all life is to reproduce. It's one of the qualifications to be considered alive. So yeah, without children, life literally loses its meaning =)

I have kids and your viewpoint is really, really extreme, and I don't agree at all.

Re: Hunting Down My Son's Killer

#220

Post by lolilives »

crag wrote: post #116
maratd wrote: post #75

Earlier quoted context omitted.

The point of all life is to reproduce. It's one of the qualifications to be considered alive. So yeah, without children, life literally loses its meaning =)

"... considered alive"? So me, being a gay man, married to a gay man, with a dog, but no children - I am not really alive? Not to mention, considering we have close (maybe more) to 7 billion on the planet, I think a little selective parenting is in order.

Some selective parenting may not be a bad idea. Unfortunately, there exists people who contribute to the growing population by reproducing in order to either leave a mark on the world or because it is believed that the purpose of life is to reproduce.
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