My 5 year old son asked me this question today when he was taking his enzymes before lunch . . . "Mommy, how many more days until my CF is all done?" <img src="i/expressions/face-icon-small-sad.gif" border="0"> It broke my heart to hear him ask this! I tried my best to explain to him that lots of really smart people are trying to find a way to get rid of his CF, but it may take them awhile to find a way to do this. Any other pointers on answering this question if it comes up again? Thanks!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Tough question to answer
- Thread starter tucksmama
- Start date
My 5 year old son asked me this question today when he was taking his enzymes before lunch . . . "Mommy, how many more days until my CF is all done?" <img src="i/expressions/face-icon-small-sad.gif" border="0"> It broke my heart to hear him ask this! I tried my best to explain to him that lots of really smart people are trying to find a way to get rid of his CF, but it may take them awhile to find a way to do this. Any other pointers on answering this question if it comes up again? Thanks!
My 5 year old son asked me this question today when he was taking his enzymes before lunch . . . "Mommy, how many more days until my CF is all done?" <img src="i/expressions/face-icon-small-sad.gif" border="0"> It broke my heart to hear him ask this! I tried my best to explain to him that lots of really smart people are trying to find a way to get rid of his CF, but it may take them awhile to find a way to do this. Any other pointers on answering this question if it comes up again? Thanks!
T
tammykrumrey
Guest
It is very hard when your child asks you this. We have been there before. A couple of years ago, my girls thought that you outgrow CF, since they personally didn't know anyone who had CF that was an adult. They said that when they grew up to be mommies that they wouldn't have CF anymore. I explained that it wouldn't go away, and that many adults have CF as well, it's just that they didn't know the people.
Then I guess that worked for a while, and my youngest must had forgotten about it. Because about a month ago while in the car there was something being said about CF (although I don't remember what it was) and my little one said "Do you mean I will always have CF?!" and when I said "yes, unless a miracle happens, you will" I saw her just turn and stare at her older sister like-'Did you know this!!?'
I am active in fundraising for the CFF, so they see and hear me doing things all of the time for CF, and they are understanding that the reason is that it costs a lot of money to make CF go away, and that even if it doesn't, there will be medicines to help keep them healthy.
Just answer the questions as they pop up as well as you can. Only you know what your child can comprehend. And most likely, at that age, at simple answer will do the trick. As they get older, they will become more curious, and I just go with the flow.
Unfortunately my nephew has CF as well, and he is much more sick than what my girls are, and they do hear more 'bad' things about CF than what they should. But I try to keep my hearbreak away from them so as to not scare them. My girls really feed off of my emotions.
We are Christians, and if someone asks them about why they take enzymes, or whatever, they just reply that they have CF and that is the way God made them.
Good luck. I am sure that many people will have suggestions as to what may work for you. I know it hurts inside<img src="i/expressions/face-icon-small-sad.gif" border="0">
Then I guess that worked for a while, and my youngest must had forgotten about it. Because about a month ago while in the car there was something being said about CF (although I don't remember what it was) and my little one said "Do you mean I will always have CF?!" and when I said "yes, unless a miracle happens, you will" I saw her just turn and stare at her older sister like-'Did you know this!!?'
I am active in fundraising for the CFF, so they see and hear me doing things all of the time for CF, and they are understanding that the reason is that it costs a lot of money to make CF go away, and that even if it doesn't, there will be medicines to help keep them healthy.
Just answer the questions as they pop up as well as you can. Only you know what your child can comprehend. And most likely, at that age, at simple answer will do the trick. As they get older, they will become more curious, and I just go with the flow.
Unfortunately my nephew has CF as well, and he is much more sick than what my girls are, and they do hear more 'bad' things about CF than what they should. But I try to keep my hearbreak away from them so as to not scare them. My girls really feed off of my emotions.
We are Christians, and if someone asks them about why they take enzymes, or whatever, they just reply that they have CF and that is the way God made them.
Good luck. I am sure that many people will have suggestions as to what may work for you. I know it hurts inside<img src="i/expressions/face-icon-small-sad.gif" border="0">
T
tammykrumrey
Guest
It is very hard when your child asks you this. We have been there before. A couple of years ago, my girls thought that you outgrow CF, since they personally didn't know anyone who had CF that was an adult. They said that when they grew up to be mommies that they wouldn't have CF anymore. I explained that it wouldn't go away, and that many adults have CF as well, it's just that they didn't know the people.
Then I guess that worked for a while, and my youngest must had forgotten about it. Because about a month ago while in the car there was something being said about CF (although I don't remember what it was) and my little one said "Do you mean I will always have CF?!" and when I said "yes, unless a miracle happens, you will" I saw her just turn and stare at her older sister like-'Did you know this!!?'
I am active in fundraising for the CFF, so they see and hear me doing things all of the time for CF, and they are understanding that the reason is that it costs a lot of money to make CF go away, and that even if it doesn't, there will be medicines to help keep them healthy.
Just answer the questions as they pop up as well as you can. Only you know what your child can comprehend. And most likely, at that age, at simple answer will do the trick. As they get older, they will become more curious, and I just go with the flow.
Unfortunately my nephew has CF as well, and he is much more sick than what my girls are, and they do hear more 'bad' things about CF than what they should. But I try to keep my hearbreak away from them so as to not scare them. My girls really feed off of my emotions.
We are Christians, and if someone asks them about why they take enzymes, or whatever, they just reply that they have CF and that is the way God made them.
Good luck. I am sure that many people will have suggestions as to what may work for you. I know it hurts inside<img src="i/expressions/face-icon-small-sad.gif" border="0">
Then I guess that worked for a while, and my youngest must had forgotten about it. Because about a month ago while in the car there was something being said about CF (although I don't remember what it was) and my little one said "Do you mean I will always have CF?!" and when I said "yes, unless a miracle happens, you will" I saw her just turn and stare at her older sister like-'Did you know this!!?'
I am active in fundraising for the CFF, so they see and hear me doing things all of the time for CF, and they are understanding that the reason is that it costs a lot of money to make CF go away, and that even if it doesn't, there will be medicines to help keep them healthy.
Just answer the questions as they pop up as well as you can. Only you know what your child can comprehend. And most likely, at that age, at simple answer will do the trick. As they get older, they will become more curious, and I just go with the flow.
Unfortunately my nephew has CF as well, and he is much more sick than what my girls are, and they do hear more 'bad' things about CF than what they should. But I try to keep my hearbreak away from them so as to not scare them. My girls really feed off of my emotions.
We are Christians, and if someone asks them about why they take enzymes, or whatever, they just reply that they have CF and that is the way God made them.
Good luck. I am sure that many people will have suggestions as to what may work for you. I know it hurts inside<img src="i/expressions/face-icon-small-sad.gif" border="0">
T
tammykrumrey
Guest
It is very hard when your child asks you this. We have been there before. A couple of years ago, my girls thought that you outgrow CF, since they personally didn't know anyone who had CF that was an adult. They said that when they grew up to be mommies that they wouldn't have CF anymore. I explained that it wouldn't go away, and that many adults have CF as well, it's just that they didn't know the people.
Then I guess that worked for a while, and my youngest must had forgotten about it. Because about a month ago while in the car there was something being said about CF (although I don't remember what it was) and my little one said "Do you mean I will always have CF?!" and when I said "yes, unless a miracle happens, you will" I saw her just turn and stare at her older sister like-'Did you know this!!?'
I am active in fundraising for the CFF, so they see and hear me doing things all of the time for CF, and they are understanding that the reason is that it costs a lot of money to make CF go away, and that even if it doesn't, there will be medicines to help keep them healthy.
Just answer the questions as they pop up as well as you can. Only you know what your child can comprehend. And most likely, at that age, at simple answer will do the trick. As they get older, they will become more curious, and I just go with the flow.
Unfortunately my nephew has CF as well, and he is much more sick than what my girls are, and they do hear more 'bad' things about CF than what they should. But I try to keep my hearbreak away from them so as to not scare them. My girls really feed off of my emotions.
We are Christians, and if someone asks them about why they take enzymes, or whatever, they just reply that they have CF and that is the way God made them.
Good luck. I am sure that many people will have suggestions as to what may work for you. I know it hurts inside<img src="i/expressions/face-icon-small-sad.gif" border="0">
Then I guess that worked for a while, and my youngest must had forgotten about it. Because about a month ago while in the car there was something being said about CF (although I don't remember what it was) and my little one said "Do you mean I will always have CF?!" and when I said "yes, unless a miracle happens, you will" I saw her just turn and stare at her older sister like-'Did you know this!!?'
I am active in fundraising for the CFF, so they see and hear me doing things all of the time for CF, and they are understanding that the reason is that it costs a lot of money to make CF go away, and that even if it doesn't, there will be medicines to help keep them healthy.
Just answer the questions as they pop up as well as you can. Only you know what your child can comprehend. And most likely, at that age, at simple answer will do the trick. As they get older, they will become more curious, and I just go with the flow.
Unfortunately my nephew has CF as well, and he is much more sick than what my girls are, and they do hear more 'bad' things about CF than what they should. But I try to keep my hearbreak away from them so as to not scare them. My girls really feed off of my emotions.
We are Christians, and if someone asks them about why they take enzymes, or whatever, they just reply that they have CF and that is the way God made them.
Good luck. I am sure that many people will have suggestions as to what may work for you. I know it hurts inside<img src="i/expressions/face-icon-small-sad.gif" border="0">
Kids dont comprehend time. I remember Jazmine asking me "how much longer" do I have to do my treatments. I said until the day I die or they find a way to cure CF. She said "NO...really Mom, How long?" I cracked up & assured her I wasnt kidding. Havent heard that question again.
Kids dont comprehend time. I remember Jazmine asking me "how much longer" do I have to do my treatments. I said until the day I die or they find a way to cure CF. She said "NO...really Mom, How long?" I cracked up & assured her I wasnt kidding. Havent heard that question again.
Kids dont comprehend time. I remember Jazmine asking me "how much longer" do I have to do my treatments. I said until the day I die or they find a way to cure CF. She said "NO...really Mom, How long?" I cracked up & assured her I wasnt kidding. Havent heard that question again.
debs2girls
New member
Every time Chey is on antibiotics, she says when she is finished with all of it, her c/f will be all gone...it breaks my heart when she says that..
debs2girls
New member
Every time Chey is on antibiotics, she says when she is finished with all of it, her c/f will be all gone...it breaks my heart when she says that..
debs2girls
New member
Every time Chey is on antibiotics, she says when she is finished with all of it, her c/f will be all gone...it breaks my heart when she says that..
I tell my son (age 6), that he will probably always need to take pills. I say it very matter of factly (not in a negative or depressing tone at all).
It broke my heart when he asked me a few months ago "Mommy, why did God give me cystic fibrosis"? He was asking that question out of genuine interest, not because he was feeling sorry for himself. Now, I know that for you fellow Christians who post, there are differing opinions on what that answer really is. But if your opinion is similar to my belief, my answer might be helpful to you. I told him that God did not give him cystic fibrosis. That God made his soul and his soul is perfect. His body was made by people (his mommy and daddy) and we had no control over whether or not he had it.
He also asks me: How long do I have to keep doing treatments. Again, I keep it very matter of fact. "For a very long time, maybe always". I try not to act sad when he asks me such questions. He needs to know the truth. And he needs to be able to ask me questions without feeling guilty (because he might think questions about CF would make me sad). Keep it honest, and at a level that they understand. That's how I deal with it!
Jena
6yr old son with CF
3 yr old daughter no CF
It broke my heart when he asked me a few months ago "Mommy, why did God give me cystic fibrosis"? He was asking that question out of genuine interest, not because he was feeling sorry for himself. Now, I know that for you fellow Christians who post, there are differing opinions on what that answer really is. But if your opinion is similar to my belief, my answer might be helpful to you. I told him that God did not give him cystic fibrosis. That God made his soul and his soul is perfect. His body was made by people (his mommy and daddy) and we had no control over whether or not he had it.
He also asks me: How long do I have to keep doing treatments. Again, I keep it very matter of fact. "For a very long time, maybe always". I try not to act sad when he asks me such questions. He needs to know the truth. And he needs to be able to ask me questions without feeling guilty (because he might think questions about CF would make me sad). Keep it honest, and at a level that they understand. That's how I deal with it!
Jena
6yr old son with CF
3 yr old daughter no CF
I tell my son (age 6), that he will probably always need to take pills. I say it very matter of factly (not in a negative or depressing tone at all).
It broke my heart when he asked me a few months ago "Mommy, why did God give me cystic fibrosis"? He was asking that question out of genuine interest, not because he was feeling sorry for himself. Now, I know that for you fellow Christians who post, there are differing opinions on what that answer really is. But if your opinion is similar to my belief, my answer might be helpful to you. I told him that God did not give him cystic fibrosis. That God made his soul and his soul is perfect. His body was made by people (his mommy and daddy) and we had no control over whether or not he had it.
He also asks me: How long do I have to keep doing treatments. Again, I keep it very matter of fact. "For a very long time, maybe always". I try not to act sad when he asks me such questions. He needs to know the truth. And he needs to be able to ask me questions without feeling guilty (because he might think questions about CF would make me sad). Keep it honest, and at a level that they understand. That's how I deal with it!
Jena
6yr old son with CF
3 yr old daughter no CF
It broke my heart when he asked me a few months ago "Mommy, why did God give me cystic fibrosis"? He was asking that question out of genuine interest, not because he was feeling sorry for himself. Now, I know that for you fellow Christians who post, there are differing opinions on what that answer really is. But if your opinion is similar to my belief, my answer might be helpful to you. I told him that God did not give him cystic fibrosis. That God made his soul and his soul is perfect. His body was made by people (his mommy and daddy) and we had no control over whether or not he had it.
He also asks me: How long do I have to keep doing treatments. Again, I keep it very matter of fact. "For a very long time, maybe always". I try not to act sad when he asks me such questions. He needs to know the truth. And he needs to be able to ask me questions without feeling guilty (because he might think questions about CF would make me sad). Keep it honest, and at a level that they understand. That's how I deal with it!
Jena
6yr old son with CF
3 yr old daughter no CF
I tell my son (age 6), that he will probably always need to take pills. I say it very matter of factly (not in a negative or depressing tone at all).
It broke my heart when he asked me a few months ago "Mommy, why did God give me cystic fibrosis"? He was asking that question out of genuine interest, not because he was feeling sorry for himself. Now, I know that for you fellow Christians who post, there are differing opinions on what that answer really is. But if your opinion is similar to my belief, my answer might be helpful to you. I told him that God did not give him cystic fibrosis. That God made his soul and his soul is perfect. His body was made by people (his mommy and daddy) and we had no control over whether or not he had it.
He also asks me: How long do I have to keep doing treatments. Again, I keep it very matter of fact. "For a very long time, maybe always". I try not to act sad when he asks me such questions. He needs to know the truth. And he needs to be able to ask me questions without feeling guilty (because he might think questions about CF would make me sad). Keep it honest, and at a level that they understand. That's how I deal with it!
Jena
6yr old son with CF
3 yr old daughter no CF
It broke my heart when he asked me a few months ago "Mommy, why did God give me cystic fibrosis"? He was asking that question out of genuine interest, not because he was feeling sorry for himself. Now, I know that for you fellow Christians who post, there are differing opinions on what that answer really is. But if your opinion is similar to my belief, my answer might be helpful to you. I told him that God did not give him cystic fibrosis. That God made his soul and his soul is perfect. His body was made by people (his mommy and daddy) and we had no control over whether or not he had it.
He also asks me: How long do I have to keep doing treatments. Again, I keep it very matter of fact. "For a very long time, maybe always". I try not to act sad when he asks me such questions. He needs to know the truth. And he needs to be able to ask me questions without feeling guilty (because he might think questions about CF would make me sad). Keep it honest, and at a level that they understand. That's how I deal with it!
Jena
6yr old son with CF
3 yr old daughter no CF
My son asks " Why does God make diseases and give them to kids and let the bad people be healthy ?" That was a hard one. In the end I told him that I don't know but that I think God has to make special people so when they grow up the can do great things. I explained that no one gave CF to him but he now has a gift that healthy children don't have. He has the gift of compassion for other people who suffer and he can choose to live his life as a person who is mad at the world because he was born with a horrible disease or he can use what he knows to make his and other people's lives better. He has decided that he will do both, because CF makes him mad but he wants to be batman so he can get rid of all the bad people and then he will be President so he can order everyone to find a cure and melt all the guns ( FROM THE MOUTH OF BABES ) These kids are so old so young, I know that one day we will have the right answer for them , I have to believe that no mater how out of reach it seems at times. For my sanity and his future I have to believe. I think he has to believe also.
My son asks " Why does God make diseases and give them to kids and let the bad people be healthy ?" That was a hard one. In the end I told him that I don't know but that I think God has to make special people so when they grow up the can do great things. I explained that no one gave CF to him but he now has a gift that healthy children don't have. He has the gift of compassion for other people who suffer and he can choose to live his life as a person who is mad at the world because he was born with a horrible disease or he can use what he knows to make his and other people's lives better. He has decided that he will do both, because CF makes him mad but he wants to be batman so he can get rid of all the bad people and then he will be President so he can order everyone to find a cure and melt all the guns ( FROM THE MOUTH OF BABES ) These kids are so old so young, I know that one day we will have the right answer for them , I have to believe that no mater how out of reach it seems at times. For my sanity and his future I have to believe. I think he has to believe also.