NYTimes cover story today, dying with teens

Melissa75

Administrator
NYTimes: Teenagers Face Early Death, on Their Terms
http://nyti.ms/1FXHRd6

This article is about teens facing the end of their lives. It's upsetting and maybe not for everyone to read, but I think worth sharing.

The article talks about how kids aren't legally part of decision making regarding their dying, but finding out what they want can be very important to them.
 
Ok that was actually a very positive story. I'm going to order the guide the story discusses and save it for the day when this may be needed. Thank you for sharing!
 

Melissa75

Administrator
You're welcome. I think it was the cover story because it's thought provoking for anyone, and those teens are such beautiful human beings.
 
W

windex125

Guest
I thought that was amazing... I loved it. I've been making a similar letter for 20+ years now to my husband, I am always thankful to update it every year. I just said to him today that I put the last one I wrote in the shredder, he said please write another. I will this week. I do think it is so many decisions for one person to make or parents, having this in writing from that loving person you may lose is a great guide for them. Pat-60
 
I'll try this again! I could have done without this story. We already have to deal with this in our face and I could have done without this story. I feel for these young people and they did not deserve this. I don't like to see this in our face when everyone on here struggles to live.
 

jaimers

Super Moderator
Thanks for sharing this Melissa. No one relishes in thinking about their death but what a gift, when faced with such a hard reality, to be able to tell your family exactly what you want and need to feel more at peace.
 

Aboveallislove

Super Moderator
I'll try this again! I could have done without this story. We already have to deal with this in our face and I could have done without this story. I feel for these young people and they did not deserve this. I don't like to see this in our face when everyone on here struggles to live.

I'm not sure what you mean that you don't like to see this in our face, other than that you don't like that someone posted it. The OP noted it might not be for everyone and I purposefully didn't read because I knew it wasn't for me. But others found it helpful and meaningful.
 
We all have an opinion and since it was put on a thread and everyone has opinions on each thread, I stated I did not like reading the story but I am glad it was meaningful to someone else. These are young people in this story with their life ahead of them and I still say I did not like it. I appreciate the OP warning but I do not agree with the others.
 

Aboveallislove

Super Moderator
Oh, I can get you didn't like the story. I knew I wouldn't which is why I didn't read it. I was just confused by the "I don't like to see this in our face."
 
Okay I will explain it further. There are people on here that are in their late teens and early twenties and early thirties and already have this "in their face" and "in the face" of the people that love them and I did not need the story. That's it. I do not have to agree that I liked it as I did not.
 

jaimers

Super Moderator
I think it's highly unlikely anyone on this forum is unaware of the outcomes for CF. I also don't think the majority of people spend all of their time thinking about the fact that they may die earlier than the average person. Sure it's a hard reality that we have to face and think about sometimes but certainly not all the time. I don't want to speak for everyone here but I'm busy living my life with CF and I don't sit around thinking about dying all the time. Do I get depressed about it and dwell unhealthily on it occasionally? Sure. But I think this article talks about a Resource that would be extremely helpful for people that would like to use it. Whether we like it or not, death will come for each of us so I would rather be able to tell my family what I want and to process through that for myself than pretend like it won't happen and let fear rule my final days because I've refused to think about the end of my life.
 
I agree with that Jaimers but this story was about young people dying and their wishes in the end. I respect the story and especially the people in the story but I really did not benefit from this story at all. I do have an opinion and it will not change. I do not have to agree with all the other people responding to this thread as I do not. My son lives his life fully and completely and has accomplished so many things already that most people without CF never accomplish. I also know when a person may be where they face this in their life that there are places that tell them all about how to take care of everything. I did not need to read it on this forum and was actually surprised. Am I the only one who feels this way? I doubt it. But if I am then that's okay too.
 

Aboveallislove

Super Moderator
Believing,

No one is asking you to change your opinion concerning whether YOU needed this article. Or to change your opinion on whether the article is helpful. But your initial comment was that you didn't need this "in your face" and I thought you clarified that that meant that some have this "in their face" of living it and that it is unbearably hard to be living this, which of course is absolutely true.

But now you seem to make the point which I had thought you initially were making and to which I responded: That it was not appropriate for this forum. This forum has a wide-group of folks involved and suffering from CF in different ways, at different stages and some of the posts will help some and some will be hard for others. When our son was first diagnosed, I didn't go to ANY groups because I couldn't handle hearing the harder stuff. And I still selectively read based on what I can handle; but I would never expect others not to post something they found important or possibly helpful to others because it would be painful some. Of course, you are entitled to your own opinion on what is appropriate for this forum, but you seem to have many issues with this community's interaction, what is appropriate to post, when to respond, what to say. I think you should seriously reflect on whether this group is the best fit for you.

Please know that tone is hard to convey electronically and I say this with the utmost concern and compassion for another mom who struggles as I do with loving her DS more than life itself and finds CF the heaviest of crosses.
 
AboveAll - Quite the contrary! I do not have a problem with how people respond or what people say or what is appropriate to post. I did not like the article on here and that will not change but I respect Melissa tremendously as she has responded on many other posts but I still feel this way. We just need to ask you AboveAll what can be said on here as I have seen in YOUR posts that you have conflict with other peoples opinions and beliefs and try to get them to think the way YOU do. Let's take for example the Religion thread on here. I do NOT try to make any one believe the way I do and I am open. For you to tell me that this is not the forum for me - who are you for you to say that? If I do not agree with whatever is out there I can still say what I feel but I do not try to make others change the way they think. You seem very self-righteous but at the same time you try to show me that you have compassion as a mother - I don't get it and frankly- I don't care. You seem to be running things here and if someone does not agree with you then they are OUT. Thank you for your opinion too. I will not tell you not to interact on this forum and I will continue to read your posts with an open mind.
 

Melissa75

Administrator
Believing, I'm sorry this thread upset you and any others. While I could have posted this is the Remembering forum, I don't think that would have reached people dealing with this situation now. So, I posted in this forum. The ideas the article covers are novel, likely not to be passed along by every social worker, and I wanted to potentially help the most people. I am sorry you were upset in the process.
 
Melissa - I was not upset at all. What AboveAll told me upset me. I appreciate you posting this article but I personally did not like reading it. That says nothing against you. I have appreciate your responses to all other posts and your compassion for people dealing with all sorts of stages. I did not say anything against you at all. I appreciate you. You did not upset me in the slightest.
 

Melissa75

Administrator
I think Aboveallislove just wants to make sure people, including you and me, feel safe starting different sorts of threads - about life, death, good and bad news.

We're all on the same side. Let's leave this thread for people who wish to talk about the subject.

Edited to add: (((hugs))) to everyone
 
If that was AboveAll's only intention then I would respect that. I believe we are all on the same side too and I am open-minded to people who think and say differently than I do, including AboveAll. She is the one who decided to tell me that maybe this forum was not for me. She does not run this forum and I am entitled to the way I feel and if it differs from hers - I am okay with it. This is not the first time I have read her demanding to be agreed with.
 

ethan508

New member
I think these stories are very informative. It is amazing how a little thing like writing down your wishes can make a trying time easier for our loved ones. The last thing I want is my loved ones second guessing themselves about doing 'what he would have wanted.' I don't like to think about it too much, but I have a song or two I'd like sung, and a few last thought I'd want to tell my family. Mostly what I want is for them to have good memories and continue to live an awesome life after I'm gone, even though I know a world without me won't ever be quite as awesome :).

That being said, I guess it is time to update my will and living will to include some of those things. Writing my wishes is one of the few things I can do to help others after I'm gone. As none of us knows when the beer truck will run us over, I suppose this something everyone should do once a decade or so.
 
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