A SENSITIVE ISSUE

Y

yellowfrog

New member
this is a very delicate question and i dont wish to upset
anyone.... at what point did you realise you had a terminal
illness? my daughter is 13 and still isnot awaare of her prognosis.
do i tell her? when do i tell her? is it better to let the hosp
tell her? will she hate me when she finds out because she will know
i knew???? HELP
 
Y

yellowfrog

New member
this is a very delicate question and i dont wish to upset
anyone.... at what point did you realise you had a terminal
illness? my daughter is 13 and still isnot awaare of her prognosis.
do i tell her? when do i tell her? is it better to let the hosp
tell her? will she hate me when she finds out because she will know
i knew???? HELP
 
Y

yellowfrog

New member
this is a very delicate question and i dont wish to upset
anyone.... at what point did you realise you had a terminal
illness? my daughter is 13 and still isnot awaare of her prognosis.
do i tell her? when do i tell her? is it better to let the hosp
tell her? will she hate me when she finds out because she will know
i knew???? HELP
 
K

Kimmiek

New member
Prognosis?
This one hits me particularly hard because I watched my mom with my brother. My assumption is she knows she has CF, and that she needs to take her meds, etc.
If she takes care of herself, there is no reason she can not live well into her 50's.

My advice is, she knows she has CF, and she is LIVING with CF, not DYING of CF. I hope you and your daughter understand, life with CF is not a "prognosis" or a death sentence.

Look at all of these people on here, getting married, going to college, LIVING! Somedays are easy and somedays are hard, but they are doing it!

Everyday is a new day, and with or without CF no one knows what we will encounter. If your daughter is 13 years old, and with the internet and all of the information out there, my assumption is SHE knows!

I wish your daughter many healthy years! Please remember, whether your daughter's glass is "half full" or "half empty" is partially up to you..
 
K

Kimmiek

New member
Prognosis?
This one hits me particularly hard because I watched my mom with my brother. My assumption is she knows she has CF, and that she needs to take her meds, etc.
If she takes care of herself, there is no reason she can not live well into her 50's.

My advice is, she knows she has CF, and she is LIVING with CF, not DYING of CF. I hope you and your daughter understand, life with CF is not a "prognosis" or a death sentence.

Look at all of these people on here, getting married, going to college, LIVING! Somedays are easy and somedays are hard, but they are doing it!

Everyday is a new day, and with or without CF no one knows what we will encounter. If your daughter is 13 years old, and with the internet and all of the information out there, my assumption is SHE knows!

I wish your daughter many healthy years! Please remember, whether your daughter's glass is "half full" or "half empty" is partially up to you..
 
K

Kimmiek

New member
Prognosis?
This one hits me particularly hard because I watched my mom with my brother. My assumption is she knows she has CF, and that she needs to take her meds, etc.
If she takes care of herself, there is no reason she can not live well into her 50's.

My advice is, she knows she has CF, and she is LIVING with CF, not DYING of CF. I hope you and your daughter understand, life with CF is not a "prognosis" or a death sentence.

Look at all of these people on here, getting married, going to college, LIVING! Somedays are easy and somedays are hard, but they are doing it!

Everyday is a new day, and with or without CF no one knows what we will encounter. If your daughter is 13 years old, and with the internet and all of the information out there, my assumption is SHE knows!

I wish your daughter many healthy years! Please remember, whether your daughter's glass is "half full" or "half empty" is partially up to you..
 
C

coltsfan715

New member
I agree with Kimmie a bit. I think she probably already knows. I remember I always inherently knew - I was sick and in the hospital frequently at a young age, it is kind of hard to get away from when you are constantly having to deal with it.

So I would venture to say YES she probably already knows, but may be having a hard time dealing with it. I knew in school, but I wanted to believe that it wasn't true - that I had been misdiagnosed or something. YES I KNOW farfetched especially since I was in the hospital every year but I wasn't thinking logically. I just didn't want to have CF, and I thought if I acted like it wasn't there maybe it would go away. That and I figured if I am going to die anyway why should I spend all my time doing meds and treatments and so on. It took me several years of sporadic treatments to realize that if I would just do what I was supposed too I didn't HAVE to die when they told me I would.

Also something else to think about in terms of her knowing. In middle school and high school we went over genetic diseases EVERY year - CF was always included and when I was in school the books were old and out of date and EVERY one of them said the average age/life expectancy for people with CF was 16. It was VERY hard to read because I was still grasping the concept of just because it is average age doesn't mean I am going to die at 16 - being that I was only 13 -14 at the time it was a bit numbing. I began thinking that I only had 2 more years .. I would be fine and then BAM I would die once I hit 16 (again I know illogical but part of how I viewed it temporarily).

I would just talk to her and ask her about it. Ask her if she knows how serious CF can be. When she says yes - have her explain it to you and how she feels about it - partially so you can make sure she really knows and partially because she may say things about how she feels that you had NO clue about. Just try to make her feel safe when you talk to her ... like HOWEVER she feels about CF is okay and you will listen and NOT judge her about her feelings. It took me a long time to really open up to my mom about it when I was younger because my parents really stressed how important it was for me to keep a positive attitude and when I started feeling badly about having CF I was afraid to say anything about it - like it would be a let down for them.

Again like Kimmie said, she probably already has some ideas about the seriousness of CF, but I would try to make her understand that it can be a manageable thing - yes it will suck sometimes and sometimes you will feel like you can't do anything about the problem - but if you take care of yourself properly it can alleviate alot of problems (at least in the near future). Also that it is okay to feel badly about it or not want to have to deal with it anymore (meaning the meds, the treatments, checking blood sugars and so on- but that you need to try and get past that). We all have to do things we don't want to do it is a part of life .. though it sucks ALOT it is a part of how things are sometimes.

I will say this though - I know I say these things, but I don't know if they would have helped me AT ALL when I was her age or around there. I am not sure if that would have helped or if I just had to reach the point on my own that I said Hey - why am I doing this to myself why am I not taking care of myself. Which is what happened - I just reached a point one day where I asked myself that and I had NO GOOD answer - so I started to work on getting better about doing my meds and stuff.

Take Care and I hope things get better,
Lindsey
 
C

coltsfan715

New member
I agree with Kimmie a bit. I think she probably already knows. I remember I always inherently knew - I was sick and in the hospital frequently at a young age, it is kind of hard to get away from when you are constantly having to deal with it.

So I would venture to say YES she probably already knows, but may be having a hard time dealing with it. I knew in school, but I wanted to believe that it wasn't true - that I had been misdiagnosed or something. YES I KNOW farfetched especially since I was in the hospital every year but I wasn't thinking logically. I just didn't want to have CF, and I thought if I acted like it wasn't there maybe it would go away. That and I figured if I am going to die anyway why should I spend all my time doing meds and treatments and so on. It took me several years of sporadic treatments to realize that if I would just do what I was supposed too I didn't HAVE to die when they told me I would.

Also something else to think about in terms of her knowing. In middle school and high school we went over genetic diseases EVERY year - CF was always included and when I was in school the books were old and out of date and EVERY one of them said the average age/life expectancy for people with CF was 16. It was VERY hard to read because I was still grasping the concept of just because it is average age doesn't mean I am going to die at 16 - being that I was only 13 -14 at the time it was a bit numbing. I began thinking that I only had 2 more years .. I would be fine and then BAM I would die once I hit 16 (again I know illogical but part of how I viewed it temporarily).

I would just talk to her and ask her about it. Ask her if she knows how serious CF can be. When she says yes - have her explain it to you and how she feels about it - partially so you can make sure she really knows and partially because she may say things about how she feels that you had NO clue about. Just try to make her feel safe when you talk to her ... like HOWEVER she feels about CF is okay and you will listen and NOT judge her about her feelings. It took me a long time to really open up to my mom about it when I was younger because my parents really stressed how important it was for me to keep a positive attitude and when I started feeling badly about having CF I was afraid to say anything about it - like it would be a let down for them.

Again like Kimmie said, she probably already has some ideas about the seriousness of CF, but I would try to make her understand that it can be a manageable thing - yes it will suck sometimes and sometimes you will feel like you can't do anything about the problem - but if you take care of yourself properly it can alleviate alot of problems (at least in the near future). Also that it is okay to feel badly about it or not want to have to deal with it anymore (meaning the meds, the treatments, checking blood sugars and so on- but that you need to try and get past that). We all have to do things we don't want to do it is a part of life .. though it sucks ALOT it is a part of how things are sometimes.

I will say this though - I know I say these things, but I don't know if they would have helped me AT ALL when I was her age or around there. I am not sure if that would have helped or if I just had to reach the point on my own that I said Hey - why am I doing this to myself why am I not taking care of myself. Which is what happened - I just reached a point one day where I asked myself that and I had NO GOOD answer - so I started to work on getting better about doing my meds and stuff.

Take Care and I hope things get better,
Lindsey
 
C

coltsfan715

New member
I agree with Kimmie a bit. I think she probably already knows. I remember I always inherently knew - I was sick and in the hospital frequently at a young age, it is kind of hard to get away from when you are constantly having to deal with it.

So I would venture to say YES she probably already knows, but may be having a hard time dealing with it. I knew in school, but I wanted to believe that it wasn't true - that I had been misdiagnosed or something. YES I KNOW farfetched especially since I was in the hospital every year but I wasn't thinking logically. I just didn't want to have CF, and I thought if I acted like it wasn't there maybe it would go away. That and I figured if I am going to die anyway why should I spend all my time doing meds and treatments and so on. It took me several years of sporadic treatments to realize that if I would just do what I was supposed too I didn't HAVE to die when they told me I would.

Also something else to think about in terms of her knowing. In middle school and high school we went over genetic diseases EVERY year - CF was always included and when I was in school the books were old and out of date and EVERY one of them said the average age/life expectancy for people with CF was 16. It was VERY hard to read because I was still grasping the concept of just because it is average age doesn't mean I am going to die at 16 - being that I was only 13 -14 at the time it was a bit numbing. I began thinking that I only had 2 more years .. I would be fine and then BAM I would die once I hit 16 (again I know illogical but part of how I viewed it temporarily).

I would just talk to her and ask her about it. Ask her if she knows how serious CF can be. When she says yes - have her explain it to you and how she feels about it - partially so you can make sure she really knows and partially because she may say things about how she feels that you had NO clue about. Just try to make her feel safe when you talk to her ... like HOWEVER she feels about CF is okay and you will listen and NOT judge her about her feelings. It took me a long time to really open up to my mom about it when I was younger because my parents really stressed how important it was for me to keep a positive attitude and when I started feeling badly about having CF I was afraid to say anything about it - like it would be a let down for them.

Again like Kimmie said, she probably already has some ideas about the seriousness of CF, but I would try to make her understand that it can be a manageable thing - yes it will suck sometimes and sometimes you will feel like you can't do anything about the problem - but if you take care of yourself properly it can alleviate alot of problems (at least in the near future). Also that it is okay to feel badly about it or not want to have to deal with it anymore (meaning the meds, the treatments, checking blood sugars and so on- but that you need to try and get past that). We all have to do things we don't want to do it is a part of life .. though it sucks ALOT it is a part of how things are sometimes.

I will say this though - I know I say these things, but I don't know if they would have helped me AT ALL when I was her age or around there. I am not sure if that would have helped or if I just had to reach the point on my own that I said Hey - why am I doing this to myself why am I not taking care of myself. Which is what happened - I just reached a point one day where I asked myself that and I had NO GOOD answer - so I started to work on getting better about doing my meds and stuff.

Take Care and I hope things get better,
Lindsey
 
N

NoExcuses

New member
I'm a little bit horrified that your 13 year old doesn't know the realities of her diease..... has she not been educated on what CF is?

I've known at least since I was 5. My parents educated me about every aspect of my disease and i've always interacted with my physicians regarding the disease as well.
 
N

NoExcuses

New member
I'm a little bit horrified that your 13 year old doesn't know the realities of her diease..... has she not been educated on what CF is?

I've known at least since I was 5. My parents educated me about every aspect of my disease and i've always interacted with my physicians regarding the disease as well.
 
N

NoExcuses

New member
I'm a little bit horrified that your 13 year old doesn't know the realities of her diease..... has she not been educated on what CF is?

I've known at least since I was 5. My parents educated me about every aspect of my disease and i've always interacted with my physicians regarding the disease as well.
 
J

Jem

New member
I agree with Kimmick and Lindsey makes many good points as we all
have different experiences to share.  I  just want to add
that my mom never let me feel sorry for myself and she always
focused on all the wonderful things in my life.
   It will hit your daughter at some point in her
life but hopefully she will realize by then that we are all
terminal and that it doesn't matter how long we live but what we do
on this earth with the time we are given.   Having cf has
made me face my mortality earlier than most but it also has made me
cherish all the blessings in my life.  My faith is the center
of my life and that gives me great peace and joy even when things
are difficult.  It helps me to focus on the here and now and
live in the moment and trust that God will take care of those I
love when the time comes for me to leave them.  I have a
awesome live with cf.  I hope and will keep in prayer that
your daughter will also.<img src="i/expressions/heart.gif" border="0">
 
J

Jem

New member
I agree with Kimmick and Lindsey makes many good points as we all
have different experiences to share.  I  just want to add
that my mom never let me feel sorry for myself and she always
focused on all the wonderful things in my life.
   It will hit your daughter at some point in her
life but hopefully she will realize by then that we are all
terminal and that it doesn't matter how long we live but what we do
on this earth with the time we are given.   Having cf has
made me face my mortality earlier than most but it also has made me
cherish all the blessings in my life.  My faith is the center
of my life and that gives me great peace and joy even when things
are difficult.  It helps me to focus on the here and now and
live in the moment and trust that God will take care of those I
love when the time comes for me to leave them.  I have a
awesome live with cf.  I hope and will keep in prayer that
your daughter will also.<img src="i/expressions/heart.gif" border="0">
 
J

Jem

New member
I agree with Kimmick and Lindsey makes many good points as we all
have different experiences to share.  I  just want to add
that my mom never let me feel sorry for myself and she always
focused on all the wonderful things in my life.
   It will hit your daughter at some point in her
life but hopefully she will realize by then that we are all
terminal and that it doesn't matter how long we live but what we do
on this earth with the time we are given.   Having cf has
made me face my mortality earlier than most but it also has made me
cherish all the blessings in my life.  My faith is the center
of my life and that gives me great peace and joy even when things
are difficult.  It helps me to focus on the here and now and
live in the moment and trust that God will take care of those I
love when the time comes for me to leave them.  I have a
awesome live with cf.  I hope and will keep in prayer that
your daughter will also.<img src="i/expressions/heart.gif" border="0">
 
C

catboogie

New member
guess what? every single person on the earth has a bad prognosis to die from something eventually. focus on the positive and if she asks questions be as honest as she can handle for her age. in other words, yes, let her know that she might not live to be an old woman; but also let her know that she might. no one knows. there is so much hope for young people these days...
 
C

catboogie

New member
guess what? every single person on the earth has a bad prognosis to die from something eventually. focus on the positive and if she asks questions be as honest as she can handle for her age. in other words, yes, let her know that she might not live to be an old woman; but also let her know that she might. no one knows. there is so much hope for young people these days...
 
C

catboogie

New member
guess what? every single person on the earth has a bad prognosis to die from something eventually. focus on the positive and if she asks questions be as honest as she can handle for her age. in other words, yes, let her know that she might not live to be an old woman; but also let her know that she might. no one knows. there is so much hope for young people these days...
 
J

Jane

Digital opinion leader
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.
 
J

Jane

Digital opinion leader
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.
 
You must log in or register to reply here.
Top