A SENSITIVE ISSUE

[Jane]

This is a good question.

I have a couple of issues with the comments here. The ones who responded at this point are NOT parents of children with CF so they do not/ can not share in the heartache this parent feels.

Amy- it is not up to you to scold anyone about their child- raising choices. This parent is asking a question out of desperation and sadness and is trying to do the right thing for their child. They are not ignorant to want to protect their child.

Kimmie- I agree, it IS up to the parents to help the child see his life as half- full and that is why this parent is asking the question. But I disagree that if a kid takes care of himself he will live into his 50s. My children have been well cared for and yet in additon to their CF, they are fighting a myco bacteria that will shorten their lives. Did we do anything wrong?

We talk to our kids daily and their doctors talk to them in clinic about the facts of managing their disease but neither of us has discussed life expectancy. Do they know they have a serious, life-threatening illness? YES Do we say, you are expected to die by age 36? NO!

Laura was right, be honest, be positive, be age-appropriate. Parents know every kid handles and processes information differently. No advice is appropriate to all children.

It is an agonizing and complicated thing to tell your child he is expected to die. There is no easy way. You have my understanding and best wishes.

 

[Allie]

I also am horrified that your daughter does not know. If she doesn't already know, when she does find out, she's going to be really upset that you lied to her all these years, at least that's my experience with others who weren't told until they were in thier teens. She deserves to hear it from you, not the hospital, you are the parent, and you need to give your child the honest truth about her disease. Most of the reason parents don't tell thier kids is NOT for thier kids' sake, but because they don't want to have the tough conversation.

Ry, like Amy, was told at 5. Contrary to popular belief, he didn't lay down and and die because he knew the truth. He lived an active, happy life. So saying that kids who know the truth are all miserable is ridiculous. And if you want to take the "we're all terminal arguement, fine, you can explain it that way, but your average is in your 70's, hers is in her 30's. Kids are still dying of this disease. There was a 16 year old who recently passed from the disease on my other list. 16. So don't tell me people aren't dying young of this.

Your daughter deserves to know the honest truth about CF. People HATE the truth, I know, but I prefer it. CF is still, according to my medical journal, uniformly fatal, and your daughter deserves to know about her disease.

 

[Allie]

I also am horrified that your daughter does not know. If she doesn't already know, when she does find out, she's going to be really upset that you lied to her all these years, at least that's my experience with others who weren't told until they were in thier teens. She deserves to hear it from you, not the hospital, you are the parent, and you need to give your child the honest truth about her disease. Most of the reason parents don't tell thier kids is NOT for thier kids' sake, but because they don't want to have the tough conversation.

Ry, like Amy, was told at 5. Contrary to popular belief, he didn't lay down and and die because he knew the truth. He lived an active, happy life. So saying that kids who know the truth are all miserable is ridiculous. And if you want to take the "we're all terminal arguement, fine, you can explain it that way, but your average is in your 70's, hers is in her 30's. Kids are still dying of this disease. There was a 16 year old who recently passed from the disease on my other list. 16. So don't tell me people aren't dying young of this.

Your daughter deserves to know the honest truth about CF. People HATE the truth, I know, but I prefer it. CF is still, according to my medical journal, uniformly fatal, and your daughter deserves to know about her disease.

 

[Allie]

I also am horrified that your daughter does not know. If she doesn't already know, when she does find out, she's going to be really upset that you lied to her all these years, at least that's my experience with others who weren't told until they were in thier teens. She deserves to hear it from you, not the hospital, you are the parent, and you need to give your child the honest truth about her disease. Most of the reason parents don't tell thier kids is NOT for thier kids' sake, but because they don't want to have the tough conversation.

Ry, like Amy, was told at 5. Contrary to popular belief, he didn't lay down and and die because he knew the truth. He lived an active, happy life. So saying that kids who know the truth are all miserable is ridiculous. And if you want to take the "we're all terminal arguement, fine, you can explain it that way, but your average is in your 70's, hers is in her 30's. Kids are still dying of this disease. There was a 16 year old who recently passed from the disease on my other list. 16. So don't tell me people aren't dying young of this.

Your daughter deserves to know the honest truth about CF. People HATE the truth, I know, but I prefer it. CF is still, according to my medical journal, uniformly fatal, and your daughter deserves to know about her disease.

 

[coltsfan715]

I just wanted to add that my parent's didn't really talk to me about life exp. stuff until I got into my teens ... I am NOT angry or mad at them. It was not appropiate for ME to hear those things earlier than my teens. I am and was a hyper sensitive and emotional person/kid. My parents were doing what was best for me. I think that it is great that some people are able to handle all the info at such a young age, but it is not the best for EVERY kid I don't think.

I highly respect everyone's opinions on here, but I didn't want you (yellowfrog) to feel like you have messed up by not talking to your daughter before now. I was always an inquisitive child and my parents kind of took the approach of she will ask when she is ready ... and I did. I may not have found out the seriousness of CF as soon as others and I may not have realized how important all my meds were by the time I was in kindergarten, but I did ask the questions when I was ready. I think like Jane said it is very subjective and needs to be said at a time when you feel it is appropriate for your daughter to hear it.

That being said I think you are thinking it may be that time - or you probably wouldn't be asking this question here. As for how to make it easier there really is NO way to make the conversation easy. It is a serious topic that can cause much heartache for all people involved. I hope that you are able to work through this situation and that you are able to get through to your daughter and help her realize the importance of her meds ... or at the least if she already knows the importance that you are able to help her become more diligent with taking her meds.

Also I know I mentioned this on another post you made, but if she wants to talk to someone with CF she is more than welcome to email me .. or you are more than welcome to email me as well. I would be more than happy to share some of my experiences with her and also to share my opinions on meds .. then (when I was at her age) and now.

My email is xiao07@hotmail.com or you can PM me through this site.

The offer always stands. Take Care and good luck.

Lindsey

 

[coltsfan715]

I just wanted to add that my parent's didn't really talk to me about life exp. stuff until I got into my teens ... I am NOT angry or mad at them. It was not appropiate for ME to hear those things earlier than my teens. I am and was a hyper sensitive and emotional person/kid. My parents were doing what was best for me. I think that it is great that some people are able to handle all the info at such a young age, but it is not the best for EVERY kid I don't think.

I highly respect everyone's opinions on here, but I didn't want you (yellowfrog) to feel like you have messed up by not talking to your daughter before now. I was always an inquisitive child and my parents kind of took the approach of she will ask when she is ready ... and I did. I may not have found out the seriousness of CF as soon as others and I may not have realized how important all my meds were by the time I was in kindergarten, but I did ask the questions when I was ready. I think like Jane said it is very subjective and needs to be said at a time when you feel it is appropriate for your daughter to hear it.

That being said I think you are thinking it may be that time - or you probably wouldn't be asking this question here. As for how to make it easier there really is NO way to make the conversation easy. It is a serious topic that can cause much heartache for all people involved. I hope that you are able to work through this situation and that you are able to get through to your daughter and help her realize the importance of her meds ... or at the least if she already knows the importance that you are able to help her become more diligent with taking her meds.

Also I know I mentioned this on another post you made, but if she wants to talk to someone with CF she is more than welcome to email me .. or you are more than welcome to email me as well. I would be more than happy to share some of my experiences with her and also to share my opinions on meds .. then (when I was at her age) and now.

My email is xiao07@hotmail.com or you can PM me through this site.

The offer always stands. Take Care and good luck.

Lindsey

 

[coltsfan715]

I just wanted to add that my parent's didn't really talk to me about life exp. stuff until I got into my teens ... I am NOT angry or mad at them. It was not appropiate for ME to hear those things earlier than my teens. I am and was a hyper sensitive and emotional person/kid. My parents were doing what was best for me. I think that it is great that some people are able to handle all the info at such a young age, but it is not the best for EVERY kid I don't think.

I highly respect everyone's opinions on here, but I didn't want you (yellowfrog) to feel like you have messed up by not talking to your daughter before now. I was always an inquisitive child and my parents kind of took the approach of she will ask when she is ready ... and I did. I may not have found out the seriousness of CF as soon as others and I may not have realized how important all my meds were by the time I was in kindergarten, but I did ask the questions when I was ready. I think like Jane said it is very subjective and needs to be said at a time when you feel it is appropriate for your daughter to hear it.

That being said I think you are thinking it may be that time - or you probably wouldn't be asking this question here. As for how to make it easier there really is NO way to make the conversation easy. It is a serious topic that can cause much heartache for all people involved. I hope that you are able to work through this situation and that you are able to get through to your daughter and help her realize the importance of her meds ... or at the least if she already knows the importance that you are able to help her become more diligent with taking her meds.

Also I know I mentioned this on another post you made, but if she wants to talk to someone with CF she is more than welcome to email me .. or you are more than welcome to email me as well. I would be more than happy to share some of my experiences with her and also to share my opinions on meds .. then (when I was at her age) and now.

My email is xiao07@hotmail.com or you can PM me through this site.

The offer always stands. Take Care and good luck.

Lindsey

 

[anonymous]

You know, stating any kind of age limit is damaging to a child. When I was young I was told I would live to be 21... OK, that sucked and it was scary. I don't agree with even saying, "well you can live into your 50's possibly." Is she terminal right now? There's no need to lable it like this to her unless she's near the end. EVERYONE is terminal at some point in their lives, regardless if were are talking about a terminal stage of cancer, terminal stage of MS, MD, Asthma, Heart issues, the list goes on. I'm 27 now and I plan on living a lot longer than just into my 50's. There are new advances every year in our favor. Sugar coat it, if you can, she'll find out what she wants to on her own. Let her know that you'll answer questions if she has them. Also, everyone's "prognosis" is different.

You are so NOT horrible for not telling your child! I can tell how much you love her and just want the best for her. It's got to be so hard. Someday I will have to tell my child that I have CF, too. That will be hard enough for me. It enters my mind every day, so I can't imagine how hard this is on you! keep us updated on how this goes.

 

[anonymous]

You know, stating any kind of age limit is damaging to a child. When I was young I was told I would live to be 21... OK, that sucked and it was scary. I don't agree with even saying, "well you can live into your 50's possibly." Is she terminal right now? There's no need to lable it like this to her unless she's near the end. EVERYONE is terminal at some point in their lives, regardless if were are talking about a terminal stage of cancer, terminal stage of MS, MD, Asthma, Heart issues, the list goes on. I'm 27 now and I plan on living a lot longer than just into my 50's. There are new advances every year in our favor. Sugar coat it, if you can, she'll find out what she wants to on her own. Let her know that you'll answer questions if she has them. Also, everyone's "prognosis" is different.

You are so NOT horrible for not telling your child! I can tell how much you love her and just want the best for her. It's got to be so hard. Someday I will have to tell my child that I have CF, too. That will be hard enough for me. It enters my mind every day, so I can't imagine how hard this is on you! keep us updated on how this goes.

 

[anonymous]

You know, stating any kind of age limit is damaging to a child. When I was young I was told I would live to be 21... OK, that sucked and it was scary. I don't agree with even saying, "well you can live into your 50's possibly." Is she terminal right now? There's no need to lable it like this to her unless she's near the end. EVERYONE is terminal at some point in their lives, regardless if were are talking about a terminal stage of cancer, terminal stage of MS, MD, Asthma, Heart issues, the list goes on. I'm 27 now and I plan on living a lot longer than just into my 50's. There are new advances every year in our favor. Sugar coat it, if you can, she'll find out what she wants to on her own. Let her know that you'll answer questions if she has them. Also, everyone's "prognosis" is different.

You are so NOT horrible for not telling your child! I can tell how much you love her and just want the best for her. It's got to be so hard. Someday I will have to tell my child that I have CF, too. That will be hard enough for me. It enters my mind every day, so I can't imagine how hard this is on you! keep us updated on how this goes.

 

[Allie]

I'm not saying say "you're going to die at 36, sucks to be you!" I'm saying tell her that CF is eventually fatal. And yes, parents do teach thier kids. If a parent can accept the truth and not let it ruin thier life, the kid will learn the same way. Ahava not only knows about death, she experienced it first hand. Is she a hopelessly depressed maniac with no joy in her life because of it? Absolutely not, we taught her that accepting reality is part of life, so she has never lerned to be afraid of the truth. Also,the attitude you have about death influences your kids. Are you terrified to speak of it? People die every day, but people sure don't act like it. I think the taboo of death is a huge issue. Don't act scared of it, and your kdis won't be. We discuss it in my family, just like we discuss birth, because it's just as natural.

 

[Allie]

I'm not saying say "you're going to die at 36, sucks to be you!" I'm saying tell her that CF is eventually fatal. And yes, parents do teach thier kids. If a parent can accept the truth and not let it ruin thier life, the kid will learn the same way. Ahava not only knows about death, she experienced it first hand. Is she a hopelessly depressed maniac with no joy in her life because of it? Absolutely not, we taught her that accepting reality is part of life, so she has never lerned to be afraid of the truth. Also,the attitude you have about death influences your kids. Are you terrified to speak of it? People die every day, but people sure don't act like it. I think the taboo of death is a huge issue. Don't act scared of it, and your kdis won't be. We discuss it in my family, just like we discuss birth, because it's just as natural.

 

[Allie]

I'm not saying say "you're going to die at 36, sucks to be you!" I'm saying tell her that CF is eventually fatal. And yes, parents do teach thier kids. If a parent can accept the truth and not let it ruin thier life, the kid will learn the same way. Ahava not only knows about death, she experienced it first hand. Is she a hopelessly depressed maniac with no joy in her life because of it? Absolutely not, we taught her that accepting reality is part of life, so she has never lerned to be afraid of the truth. Also,the attitude you have about death influences your kids. Are you terrified to speak of it? People die every day, but people sure don't act like it. I think the taboo of death is a huge issue. Don't act scared of it, and your kdis won't be. We discuss it in my family, just like we discuss birth, because it's just as natural.

 

[Chaggie]

This may sound ridiculous, but it didn't hit me until I started
posting here a few months ago.  I mean I knew it would
probably kill me eventually, hell remember coming up on the median
when I was 18 and thinking I'm going to blow by that,  but it
never seemed to be an issue I had to deal with. I've never been
sick and never had any problems do anything I wanted whether it was
sports related, school, or work.   What hit me even
harder was when I found about the infertility when I was 17.
 I bet she understands more than you think but doesn't think
about much.  I would talk to her about it get a feel for how
much she does understand circumstances and go from there.

 

[Chaggie]

This may sound ridiculous, but it didn't hit me until I started
posting here a few months ago.  I mean I knew it would
probably kill me eventually, hell remember coming up on the median
when I was 18 and thinking I'm going to blow by that,  but it
never seemed to be an issue I had to deal with. I've never been
sick and never had any problems do anything I wanted whether it was
sports related, school, or work.   What hit me even
harder was when I found about the infertility when I was 17.
 I bet she understands more than you think but doesn't think
about much.  I would talk to her about it get a feel for how
much she does understand circumstances and go from there.

 

[Chaggie]

This may sound ridiculous, but it didn't hit me until I started
posting here a few months ago.  I mean I knew it would
probably kill me eventually, hell remember coming up on the median
when I was 18 and thinking I'm going to blow by that,  but it
never seemed to be an issue I had to deal with. I've never been
sick and never had any problems do anything I wanted whether it was
sports related, school, or work.   What hit me even
harder was when I found about the infertility when I was 17.
 I bet she understands more than you think but doesn't think
about much.  I would talk to her about it get a feel for how
much she does understand circumstances and go from there.

 

[anonymous]

Ok, just becasue the average life expectancy of a CFer is 36 doesn't mean they are "expected" to die by the age of 36. It's an average, hence some live longer some don't live as long.

"Telling" Sean is not an issue for us. He's known his whole life that he has CF and that it's fatal. We decided, upon diagnosis, that we would always be honest with him and that's exactly what we've done. Every time, he/his brother/family member/friend asked a question about CF, we answered truthfully and took those as opportunities to teach Sean and others about CF. Sean knows the score. He knows all about Ry (thanks to Allie), he knows all about Mark, and I tell him as much as I can about the adults on here. Some are happier stories than others but that's life. Sean has CF pen pals that are healthier than him and pen pals that aren't as healthy. Again, that's life, especially a life with CF.

One of the reasons that we decided to be so up front with Sean was because I'd read an article from a CF mom whose son was celbrating his 5th B-day and at the party one of his little friends announced to all the kids that CF meant you were going to die. The mother was mortified. She was planning on telling her son but hadn't and now he found out from some kid in a less than sympathetic manner. I couldn't imagine that happening to Sean.

Our clinic is also very open and insists that Sean take responsibilty for his own care. They make it clear to him that if he isn't responsible for his own care his lung function will go down and his "prognosis" won't be so good.

I think, the sooner you sit down and speak with your daughter about the realities of CF the better. You don't have to paint a "half empty" type of picture. Just be honest.

Claudette (aka CFHockeymom)

 

[anonymous]

Ok, just becasue the average life expectancy of a CFer is 36 doesn't mean they are "expected" to die by the age of 36. It's an average, hence some live longer some don't live as long.

"Telling" Sean is not an issue for us. He's known his whole life that he has CF and that it's fatal. We decided, upon diagnosis, that we would always be honest with him and that's exactly what we've done. Every time, he/his brother/family member/friend asked a question about CF, we answered truthfully and took those as opportunities to teach Sean and others about CF. Sean knows the score. He knows all about Ry (thanks to Allie), he knows all about Mark, and I tell him as much as I can about the adults on here. Some are happier stories than others but that's life. Sean has CF pen pals that are healthier than him and pen pals that aren't as healthy. Again, that's life, especially a life with CF.

One of the reasons that we decided to be so up front with Sean was because I'd read an article from a CF mom whose son was celbrating his 5th B-day and at the party one of his little friends announced to all the kids that CF meant you were going to die. The mother was mortified. She was planning on telling her son but hadn't and now he found out from some kid in a less than sympathetic manner. I couldn't imagine that happening to Sean.

Our clinic is also very open and insists that Sean take responsibilty for his own care. They make it clear to him that if he isn't responsible for his own care his lung function will go down and his "prognosis" won't be so good.

I think, the sooner you sit down and speak with your daughter about the realities of CF the better. You don't have to paint a "half empty" type of picture. Just be honest.

Claudette (aka CFHockeymom)

 

[anonymous]

Ok, just becasue the average life expectancy of a CFer is 36 doesn't mean they are "expected" to die by the age of 36. It's an average, hence some live longer some don't live as long.

"Telling" Sean is not an issue for us. He's known his whole life that he has CF and that it's fatal. We decided, upon diagnosis, that we would always be honest with him and that's exactly what we've done. Every time, he/his brother/family member/friend asked a question about CF, we answered truthfully and took those as opportunities to teach Sean and others about CF. Sean knows the score. He knows all about Ry (thanks to Allie), he knows all about Mark, and I tell him as much as I can about the adults on here. Some are happier stories than others but that's life. Sean has CF pen pals that are healthier than him and pen pals that aren't as healthy. Again, that's life, especially a life with CF.

One of the reasons that we decided to be so up front with Sean was because I'd read an article from a CF mom whose son was celbrating his 5th B-day and at the party one of his little friends announced to all the kids that CF meant you were going to die. The mother was mortified. She was planning on telling her son but hadn't and now he found out from some kid in a less than sympathetic manner. I couldn't imagine that happening to Sean.

Our clinic is also very open and insists that Sean take responsibilty for his own care. They make it clear to him that if he isn't responsible for his own care his lung function will go down and his "prognosis" won't be so good.

I think, the sooner you sit down and speak with your daughter about the realities of CF the better. You don't have to paint a "half empty" type of picture. Just be honest.

Claudette (aka CFHockeymom)

 

[mic10467]

I will be 39 tomorrow and I don't think of myself as having a "terminal" illness. I really don't understand trying to live with this label. There are so many different ranges of CF, with people living long, relatively normal lives. My mom never explained things to me about having a serioius disease, but agreed with me that what it said in the medical books defied what really seemed to be happening to me with my CF. Of course, my case was completely different because of not finding out til I was 18, despite a life of sickness. My younger brother, 34, is living well after a successful double-lung transplant last October. And now, I have to watch my older brother raise his son, 1 1/2 who was diagnosed with CF. Even between my brother with CF and I, is a big difference in attitude toward the CF. I spent alot of time fighting the CF, exercising, trying to find supplements that helped, drinking alot of water, doing whatever I could in my power to affect the CF. My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it. We are blessed that his transplant was successful and he can live a better life now. One can argue that I have a mild disease, which is what I have heard for years, but I've been sick and I fight my way back. Is it that I have a mild disease, or is it that I somehow have developed a sense inside that I can fight the CF, that it isn't terminal or bigger than me. I have seen the difference in CFers lives who have different attitudes and also I've watched how my brother and I have lived our lives. One can choose the attitude and approach in life that they have toward the CF.

I think the greatest thing my mom gave me was the freedom of making up my own mind of what this CF really was. I don't really get the part about telling the child he has a terminal illness, with all due respect. That is a label medical people made up, even people with cancer, supposedly terminal, aren't always terminal. If your daughter hears from you that she is terminal, that is what she will think of herself. I think there is great power in a person's attitude of the CF, that directly affects the rate of illness. Which CFers are healthiest, the ones that live their lives as normal as they can, and still take care of their CF. Noone really knows how long a CFer will live, or how healthy he/she is going to be. I know that your innocent question wasn't meant to upset anyone, but it angers me, I'm sorry.

In my life, I've seen my fellow cfers and the way they either think of themself or are treated by their parents and to me it makes all the difference in this disease. As crappy as my growing up years were to not know I had CF, I consider it a great blessing that by time I did know, that I was able to make up my mind as to what CF is. I would ask you to let your daughter make up her mind as to what it means to her and how much she is going to let it affect her life. I think the advice that Lyndsey gave you was wonderful about talking openly with your daughter when she is old enough to comprehend certain issues such as terminal. It's a word other people made to label the disease, but each person is different.

I've been raised to really believe that what one thinks about most, subconsciously programs the direction of your life. The power of the mind is a great thing. If one is walking around thinking, I have a terminal illness, I'm dying, my CF is fatal, what kind of life can one live. The person would walk around feeling sorry for themself everyday, every minute of their life. When I hear these descriptions, I don't feel connected that they are the same thing that I live with.

Guess, I am from the free thinking school of thought. I think I'd be angry if my mother told me that my CF was terminal. I know I am angry at the books for saying that, because guess what I'm still here. All of the things that i did not let myself do at the age of eighteen through thirty because i had cf and wasn't going to live long anyways. It's taken me until 33 to understand I have CF and to live the life I was given the best I can. Some of us aren't terminal and then you are left with a life that you could of did more with. Just my thoughts. Let her live the best life that she was given, don't fill her mind with ideas to program how long her life is.

Michelle 39w/cf