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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#191

Post by SCdF »

maratd wrote: post #89
slurgfest wrote: post #76

Earlier quoted context omitted.

It is not necessary or helpful to be uncivil about this. altrego99 is expressing a considered personal view with which you disagree, not insulting you or the mass of humanity. You are entitled to your personal view as well. But you could recognize consideration of the issue as a good thing and the disagreement as normal and healthy. Instead, you are calling people terrible names and picking on grammar, without provoc…

> But the implication that no one with kids could ever disagree with you is not correct It is impossible to speak about any subject intelligently unless you have experience with it. That's just how reality works. If that offends your sensibilities, may I suggest you're a tad too sensitive?

I really hate that argument, because if you're here to have an actual conversation then the whole "you'll never understand until you x" statement is just you shutting the conversation down.

How about this: living without children at this time in your life where you currently have children is awesome and amazing, and you'll never understand how great it is because you have children. Yes you lived without children before but you were younger then, it's totally different now.

It's impossible for you to disagree with me, because you have no experience in this situation. It's just how reality works. Something something sensibilities.

Re: Hunting Down My Son's Killer

#192

Post by danparsonson »

throw-a-way-3 wrote: post #107
yason wrote: post #63

Earlier quoted context omitted.

Marriage is about compromise. Children, however, afford no such privilege. No, marriage is having one heck of a good time living your life with your spouse. Being a single parent is better than a bad marriage. And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period. Your spouse is the person you spend rest of your life (or at least decades, if you're luc…

> And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period. Eye-opener for me. This is very true, and a harsh truth at that. You made me finally understand what broke my parents' relationship. One of them focused on children, with "at all costs" mindset. And the cost was great indeed. > and you won't even have much control over theirs for more than the 10…

That's a false dichotomy - putting your children first doesn't have to mean 'at all costs'. Strike a balance between the two.

Parents' first responsibility should be to their children, who didn't choose to be born (that was the parents' choice) and haven't yet learned the important lessons in life - such as how to care for others. It's not about controlling so much as guiding.

Selfish behaviour begets selfish children.

Re: Hunting Down My Son's Killer

#193

Post by Mz »

Scaevolus wrote: post #187
Mz wrote: post #119

This is incredibly long and seems like it will probably never tell me the info that interests me. As I understand it, in most genetic disorders, all of the problems are rooted in a miscoded protein. I am wondering if it has been determined which protein is miscoded and what it does? Edit: I have managed to read the whole thing and, no, it doesn't answer my question. The closest I get is that some enzyme is not being…

"Cristina and I each carried a different mutant NGLY1 gene." NGLY1 is also the name of the enzyme.

Um, it's possible I am just stupid and I am still trying to look up info on this. But that doesn't help me adequately understand it.

This piece is interesting to me because I have a form of cystic fibrosis, which is a genetic disorder. Long QT waves -- the heart problem the child had from an antibiotic -- can be caused by a magnesium deficiency. Magnesium supplementation helps a lot of people with CF. Also, they mention a possible treatment for this condition that is currently used for some people with CF. So I am wondering how it relates to my condition, basically. But I have gotten well by framing the question different from the medical community and others with my condition.

In cystic fibrosis, the miscoded protein is the CFTR, which handles traffic into and out of the cell for certain specific molecules. Understanding which molecules are impacted was enormously useful info. People with CF are routinely put on digestive enzymes, which I no longer require. So I am trying to understand what is going on with this child in terms which make sense from my mental framework regarding my genetic disorder and "enzyme deficiency" doesn't sound to me like it is really the root problem (but maybe I am an idiot -- it would hardly be a first). That may not be possible to achieve but I will work on it anyway.

Thank you for replying.

Re: Hunting Down My Son's Killer

#194

Post by run4yourlives »

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…

This is a fucking awesome comment, perhaps the best one on HN today, and most certainly in this thread.

Even removed from the "kids aren't so great" angle you are saying something I think a lot of people - especially on HN - need to hear, and you are saying it well. Cheers.

Re: Hunting Down My Son's Killer

#195

Post by mibbitier »

gcheong wrote: post #185
mibbitier wrote: post #171

Earlier quoted context omitted.

Virgins probably also don't see what the big deal about having sex is. They've probably heard horror stories about it. Being a father/mother is simply the best thing you can do with your life (Unless you hate kids, or are too "grown up").

Plenty of people decide to choose lives of celibacy both as virgins and non-virgins and have no regrets. Like I said, there are plenty of parents who would say it is not. Why should I take what you say as truth over them?

You shouldn't. If you don't feel the overwhelming need to have children, you probably shouldn't.

I wanted to have children from when I was about 10. I knew that it would be the most important thing I was to do with my life, and that's how it's turned out.

FWIW I don't know a single parent who would say that it's not absolutely awesome to be a parent. Maybe I don't know many bad parents...

Re: Hunting Down My Son's Killer

#196

Post by run4yourlives »

paulhauggis wrote: post #36
mcmatterson wrote: post #29

Earlier quoted context omitted.

Balls to this. As your sibling commenter says, you simply don't get to pass judgement on this if you haven't had a child of your own. Sure, we're programmed to behave with an otherwise inexcusable amount of irrationality with our kids, but that's not by accident. If anything, it demonstrates the level of evolutionary importance in keeping our offspring healthy and ensuring their success: it's such an important direct…

"As your sibling commenter says, you simply don't get to pass judgement on this if you haven't had a child of your own." You aren't gay, so you can't pass judgement on gay rights. You don't smoke weed, so you have no say in the laws The thing is. You can still have an opinion (and pass judgement)..even if you haven't experienced it yourself.

We're not talking about laws here, we're describing experiences. Nobody is suggesting that all people should be parents.

Your corrected analogies are as follows:

You aren't gay, so you can't pass judgement on what it means to be gay.

You don't smoke weed, so you have no idea what it's like to be high.

Both of these statements are perfectly valid, and having a bunch of straight people talk about what it is like to be gay or a bunch of prudes talk about how out of sorts you are when you are high is pretty ridiculous.

Re: Hunting Down My Son's Killer

#197

Post by run4yourlives »

mibbitier wrote: post #195
gcheong wrote: post #185

Earlier quoted context omitted.

Plenty of people decide to choose lives of celibacy both as virgins and non-virgins and have no regrets. Like I said, there are plenty of parents who would say it is not. Why should I take what you say as truth over them?

You shouldn't. If you don't feel the overwhelming need to have children, you probably shouldn't. I wanted to have children from when I was about 10. I knew that it would be the most important thing I was to do with my life, and that's how it's turned out. FWIW I don't know a single parent who would say that it's not absolutely awesome to be a parent. Maybe I don't know many bad parents...

There are a few people that regret being parents. The funny thing is that if you talk to them you'll find that they've become parents because they though it's something the should do, and not something they wanted to do.

Re: Hunting Down My Son's Killer

#198

Post by danparsonson »

Mz wrote: post #119

This is incredibly long and seems like it will probably never tell me the info that interests me. As I understand it, in most genetic disorders, all of the problems are rooted in a miscoded protein. I am wondering if it has been determined which protein is miscoded and what it does? Edit: I have managed to read the whole thing and, no, it doesn't answer my question. The closest I get is that some enzyme is not being…

Different proteins for different disorders - from what you wrote it seems like you read it as one particular protein that's commonly implicated in many different disorders?

Imagine one part of your car was randomly the wrong shape. You'd have Twisted Wheel-Nut Syndrome or Split Spark-Plug Disease or whatever, all of which could be caused by badly copied blueprints for the car.

Re: Hunting Down My Son's Killer

#199

Post by gcheong »

mibbitier wrote: post #195
gcheong wrote: post #185

Earlier quoted context omitted.

Plenty of people decide to choose lives of celibacy both as virgins and non-virgins and have no regrets. Like I said, there are plenty of parents who would say it is not. Why should I take what you say as truth over them?

You shouldn't. If you don't feel the overwhelming need to have children, you probably shouldn't. I wanted to have children from when I was about 10. I knew that it would be the most important thing I was to do with my life, and that's how it's turned out. FWIW I don't know a single parent who would say that it's not absolutely awesome to be a parent. Maybe I don't know many bad parents...

Thank you! You see for a minute there I thought you were in the "everyone should have kids" camp. So really we are not so far apart in opinion because if you wanted to have kids since you were 10 and, not really knowing anything else about you but assuming you are a good, responsible person, I would be the first to say you should have kids.

Having had an experience and not desiring to repeat it has nothing to do with whether or not you were good or bad at it. Plenty of bad parents out there who for some reason keep having kids and will probably tell you it's the most awesome thing and most of the good parents I know take a measured approach to their own procreation. Some have honestly said they probably would not do it again - of course who knows as they can't go back.

Re: Hunting Down My Son's Killer

#200

Post by sgoranson »

its_so_on wrote: post #163
postfuturist wrote: post #140

Earlier quoted context omitted.

Yep, it's also disheartening to see them holding a printout of one of the few articles available online, which I already know is pretty out-of-date and down-right wrong in places.

Why don't you just tell them that you're pretty well-versed? Doctors are pretty smart. I wouldn't presume to say this is always appropriate, but depending on the rapport they might listen attentively to what you know from your own research (though they would probably check before acting on it.) Doctors know very well that a person with a specific rare disease has a lot more incentive to have spent in-depth research o…

You speak like someone who probably hasn't spent a good chunk of their life as a patient. You are correct; the best doctors know the limit of their own knowledge and will respect a knowledgeable patient. I respect my top notch specialists more than anyone on the planet. But those are the best doctors. There are many more average and outright bad doctors, just like any other skilled profession. Some that can't keep their ego in check, some that just aren't very good at deconstructing a complex problem.
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