NYTimes cover story today, dying with teens


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My parents have allowed me to dictate my health choices for many years now, even before I was 18. They wanted me to be responsible for my own health, and when the time came, my own death. I think the first time I told them I didn't want to be "a vegetable" was when I was about 12. I have a living will and an advanced directive that my parents understand and will follow. I've also told them that they can plan a funeral however they want, but that I don't want my family wearing black or dark colors to it. They also know that, if at all possible, I want to "be made into a tree," since I found a company that uses ashes as fertilizer for a tree. I've always loved the outdoors and the idea of growing into a new life is peaceful to me.

I found this article to be really helpful. No one wants to face their own mortality; it's a really hard thing to think about. But I also think it's something everyone needs to do, cf or not. Thank you for sharing.


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I'm a little surprised that this story needed to be told. Today I turned 65 but it was just yesterday I was fifteen. I can put on my age 15 mind and do a pretty good job of relating to the fifteen year old of today. I'm lucky enough to have lived through fifteen and then live long enough to appreciate interacting with a teen as an adult.

Then again, from the lively discussion, I realize that for many people the memories from a particular time aren't retained. It is as if each seminal stage of life is archived and only the current status quo is relative. I realize there are different ways people express respect for somebody who is dying or to the loved ones of somebody recently passed. My wife's family showed respect by remaining silent. They never asked questions, and politely sat silent, choosing to show their support by just being there. They aren't alone, the world is quite full of people awkwardly lost in times of grief.

This has everything to do with the considerations for a young person's last wishes. It is precisely the head in the sand denial by some loved members of a dying youth, that is at the crux of the News story. In a way, it is like a Will with a codicil detailing how they wish to be memorialized. The statistics are much better today but even before a child is born, parents are worrying about their child dying. It is hard wired into our brains.

I can say for certain about the only preparation I had for a possibly young demise was my mother teaching me The Lord's Prayer. OK, There was "Now I lay me down to sleep" but that was it. I can't remember if it was meningitis or when I contracted encephalitis they feared I had polio and I learned the prayer.

For most CFers, I can't imagine they haven't spent time in the hospital. Kids in a hospital tend to talk about the very things nobody else is being forthcoming with. When I was maybe 11, I had been kicked in the ribs rough housing on the school playground. That evening I peed blood clots and fresh blood. Swept off to the ER, our family doctor admitted me for observation. I was beginning to realize all hospitalizations were just for observation and they were sticking to that story.

This hospital visit was a life changing experience. Pediatric nurses are a dedicated lot and they have such hard jobs. The hospital room had three boys, me, a kid with a newly broken leg and another boy with his head in a cast. He caught part of the blast from a shotgun that had slipped down from the corner of a pickup truck bed. In the middle of the second night, we heard the boy with the shotgun wound die. I wasn't certain if he in fact was dead, so I hopped out of my bed and pushed his call button. Two nurses came immediately, then quickly left and returned with a gurney, removing him. I can't explain why we pretended to be asleep but we did. One nurse figured out he hadn't pushed his own call button and leaned down to ask if that was the case. I nodded and she placed her finger over her lips signalling me to be quiet.

The next day, it was as if he had never been in the hospital. No belongings, no returning family and a dozen kids playing detective, trying to ferret out what nobody was saying. I shared the details with only one other patient. A girl in isolation had celebrated her birthday the day before and his parents had brought a present for him to give her. She was also the oldest patient in the ward, 13 or 14. Depending on the age of the inquisitor, the nurses told kids he had gone home in the middle of the night because they had a long ways to drive to flat denying such child ever existed. These were pre-cognitive aged children who happily suspended their belief.

For some people this entire subject is too painful. I believe this News story is enlightening for the parents and their children who might precede them,


Gammaw, If I may presume. The movie "Love Story' came out right around when my too young father died. My mother and I went to see this popular movie. When the build up to the scene where Jenny knows she's going to die finished, my mother turned to me and said, "I have seen the ending, I'll wait in the lobby". You know how it ends, maybe too much.
LittleLab: Thank you for sharing your memory of a time in your childhood. I love reading your stories and explanations. Also thank you for understanding ALL sides of this article. For me personally I did not need to see this because like you said - the subject is too painful for me to think anything would happen to my children. CF gives you enough things to fear and this is the ultimate. I already knew this article may help someone else and I never said it did not or that it should not have been posted - only that I was surprised it was posted. I only stated my opinion and then got attacked for that because it was not in agreement with the others but I did not say a thing about the interaction of this forum on this thread.

Since it was brought up by AboveAll on this thread I will respond that I did not bring that up on this thread but I still stand by the other thread - "Where are all the people on this forum when you need support?". I posted this thread because of what was an injustice to another CF'er on this forum and then again to another CF'er - so I spoke up. Since then I have gave up trying to make things equal or fair and have accepted it is what it is and maybe I was expecting too much or being judgmental so to hear a person say today that this forum was not for me from a simple statement that I personally did not like this article makes me think that person may have had a guilty conscience.? And to answer you AboveAll - Yes this article is painful and No I did not like to see this "in my face" and NO I NEVER said it should not be posted or that it did not help anyone else. You said that or implied that as you have implied many things about other people, not just me, when they do not conform to your ideas. I know this article may have helped someone and maybe several. I only stated my opinion about it. That's it. Blessings!


walking on egg shells it seems there has been quite a bit of that going on, I posted on the Huff thread and there was a person ready to say something negative I am sure only because it was me who posted it, am I being stalked because of my opinion??, is someone waiting there to pounce and tell me how wrong I am to feel this way??? these forums are all abt. facts, experiences, and people taking the time to post, give someone else insight to what they are now experiencing. you don't like it.... don't read it...get up and change the channel plain and simple. you seem like a very troubled soul, so instead of getting angry, or calling you out on yr. attitude flare ups. I will say a pray for you, so that you may find some peace in yr. heart. No one is ever expected to agree on every subject but I've yet to find one that has not been helpful to someone, even if you get one response. I am not naming names or pointing the person out you know who you are. Peace be with you...
Windex - I would never "stalk" you or anyone else. I know you are talking about me as it was me who accidentally responded on the thread about Huff coughs when I meant to respond to this thread just to give my opinion on an article. The reason that happened is because I went in to Recent Activity and clicked on your name so it would bring up the last person. I had unknowingly posted under that because you had posted 3 different responses to 3 different threads one right after the other and I did not notice that so I thought I was in the right thread until after I posted it and noticed and then apologized. I was never going to say anything negative about the Huff coughs or you at all. I was just giving my opinion on this thread right here. I guess comments that are not in agreement with the majority of regulars on this forum really get scrutinized and "outed". From now on I guess I will not say a single thing about anything unless it is cheery or a question or trying to help someone that is in despair. I do not have a single thing against you Windex and, in fact, I find most of your posts very funny. If you think I am troubled that is fine. I am a grown-up and I am okay with your analysis. I was trying to reply to this thread that it was sad to me. That is all. I apologize for getting on the wrong thread. Prayers are always appreciated.


LL thank you for sharing your story. I think there are two topics that don't get discussed enough. One is mental health and the other is end of life care. I think what I took from the article is that these kids and young adults did want to discuss the topic. This disease or other ones can make them wise beyond their years. At some point all of us have probably confronted our own mortality. For as long as I can remember I've been older than the published life expectancy numbers. As a parent I've learned to love and respect my own parents even more. They handled my brothers passing with such grace that my sisters and I were prepared when the time did come. Since many more of us are now making it into adulthood we should prepare living wills and powers of attorneys. By having our wishes known it can relieve our family and loves ones from additional stress.


New member
I agree wholeheartedly with your post, Jet. I actually became an active art of planning my future when my mom shared that when her father died, they didn't know what he wanted done and it caused a lot of stress and arguments regarding what his family thought he wanted. I definitely don't think mortality needs to be a part of everyday conversation, because that would make life a little too difficult to handle, and it shouldn't be a forced topic of conversation, either. But I think it's smart to prepare for any future. I'm working on getting a bachelor's degree and plan on getting a double Masters because I am planning on living as long as a possibly can, but I've also made my wishes known if I pass away earlier.