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don,t want to be insensative but.....
- Thread starter anonymous
- Start date
Dear Anonymous
I think it is good that you are realizing that you need to tell your son soon. I would just tell him that you have cf and that you have a mild case and the way to keep it mild is to do all your therapy and keeping taking your medications. Exercise is very important. I would stress that it is a condition rather than a disease. If he wants to research the illness later on that is up to him but breaking it to him gently would be very important and doing so in a matter of fact way. If he starts to ask questions and you feel you cannot answer him the best way to handle this is to say We will talk to your doctor about this. I would be very encouraging throughout your talk. You are telling him because he is old enough to know and he needs to take responsibility for his health. He is old enough to do so. The more independent he is the better off he will be health wise. IF you wait to tell him and if he finds out from another source he might resent you for a long time. I hope this does not happen and you can tell him soon. I would not focus on the life threatening part as he does not sound very sick. Just because cF is a terminal illness for some does not mean it is for all. There are many people with CF who are healthy and will live a long life. Try to focus on the positive
Take care and Best of Success
Risa
I think it is good that you are realizing that you need to tell your son soon. I would just tell him that you have cf and that you have a mild case and the way to keep it mild is to do all your therapy and keeping taking your medications. Exercise is very important. I would stress that it is a condition rather than a disease. If he wants to research the illness later on that is up to him but breaking it to him gently would be very important and doing so in a matter of fact way. If he starts to ask questions and you feel you cannot answer him the best way to handle this is to say We will talk to your doctor about this. I would be very encouraging throughout your talk. You are telling him because he is old enough to know and he needs to take responsibility for his health. He is old enough to do so. The more independent he is the better off he will be health wise. IF you wait to tell him and if he finds out from another source he might resent you for a long time. I hope this does not happen and you can tell him soon. I would not focus on the life threatening part as he does not sound very sick. Just because cF is a terminal illness for some does not mean it is for all. There are many people with CF who are healthy and will live a long life. Try to focus on the positive
Take care and Best of Success
Risa
Dear Anonymous
I think it is good that you are realizing that you need to tell your son soon. I would just tell him that you have cf and that you have a mild case and the way to keep it mild is to do all your therapy and keeping taking your medications. Exercise is very important. I would stress that it is a condition rather than a disease. If he wants to research the illness later on that is up to him but breaking it to him gently would be very important and doing so in a matter of fact way. If he starts to ask questions and you feel you cannot answer him the best way to handle this is to say We will talk to your doctor about this. I would be very encouraging throughout your talk. You are telling him because he is old enough to know and he needs to take responsibility for his health. He is old enough to do so. The more independent he is the better off he will be health wise. IF you wait to tell him and if he finds out from another source he might resent you for a long time. I hope this does not happen and you can tell him soon. I would not focus on the life threatening part as he does not sound very sick. Just because cF is a terminal illness for some does not mean it is for all. There are many people with CF who are healthy and will live a long life. Try to focus on the positive
Take care and Best of Success
Risa
I think it is good that you are realizing that you need to tell your son soon. I would just tell him that you have cf and that you have a mild case and the way to keep it mild is to do all your therapy and keeping taking your medications. Exercise is very important. I would stress that it is a condition rather than a disease. If he wants to research the illness later on that is up to him but breaking it to him gently would be very important and doing so in a matter of fact way. If he starts to ask questions and you feel you cannot answer him the best way to handle this is to say We will talk to your doctor about this. I would be very encouraging throughout your talk. You are telling him because he is old enough to know and he needs to take responsibility for his health. He is old enough to do so. The more independent he is the better off he will be health wise. IF you wait to tell him and if he finds out from another source he might resent you for a long time. I hope this does not happen and you can tell him soon. I would not focus on the life threatening part as he does not sound very sick. Just because cF is a terminal illness for some does not mean it is for all. There are many people with CF who are healthy and will live a long life. Try to focus on the positive
Take care and Best of Success
Risa
at age 8 i wouldnt say life shortening to him, i would just explain that there 'you do have a disease which means you must take extreme care of yourself to help prevent any illnesses, as he matures and understands more you can help him research cf and read books together, but at age 8 he should be having fun and not worrying about dieing, just make it a point that he has to take more care of himself and do all his meds so he can grow up to be healthy and live a lone life...
at age 8 i wouldnt say life shortening to him, i would just explain that there 'you do have a disease which means you must take extreme care of yourself to help prevent any illnesses, as he matures and understands more you can help him research cf and read books together, but at age 8 he should be having fun and not worrying about dieing, just make it a point that he has to take more care of himself and do all his meds so he can grow up to be healthy and live a lone life...
Emily65Roses
New member
I just want to make one point, and then I'll leave it be, because people never like to listen to the whole "reason" and "logic" thing. He will find out what CF *really* means whether you tell him or not (and yes I mean that whole dying young thing --- it happens in most cases, whether you choose to believe it or not). If you'd rather have him find out on a website or in a book, then hey, that's your decision. But if I were you, I think I'd rather tell my kid myself.
Edited to add: That wasn't really aimed at the original poster, because you didn't say anything about wanting to sugarcoat or lie... that's just aimed at some of the responses.
Edited to add: That wasn't really aimed at the original poster, because you didn't say anything about wanting to sugarcoat or lie... that's just aimed at some of the responses.
Emily65Roses
New member
I just want to make one point, and then I'll leave it be, because people never like to listen to the whole "reason" and "logic" thing. He will find out what CF *really* means whether you tell him or not (and yes I mean that whole dying young thing --- it happens in most cases, whether you choose to believe it or not). If you'd rather have him find out on a website or in a book, then hey, that's your decision. But if I were you, I think I'd rather tell my kid myself.
Edited to add: That wasn't really aimed at the original poster, because you didn't say anything about wanting to sugarcoat or lie... that's just aimed at some of the responses.
Edited to add: That wasn't really aimed at the original poster, because you didn't say anything about wanting to sugarcoat or lie... that's just aimed at some of the responses.
Sorry Emily, but i think your being a bit HARSH by saying ( the whole dying young thing- it happens in most cases). It might happen in most cases to people diagnosed 20+yrs ago.
But i don't think it will be as common in the newly and most recent diagnosed. As they are dedected/diagnosed early they stand a much better chance at living a longer life, with treatment and newly developed medications. As well as new research findings and studies into preventing and controlling certain bacterias in CF.
But i don't think it will be as common in the newly and most recent diagnosed. As they are dedected/diagnosed early they stand a much better chance at living a longer life, with treatment and newly developed medications. As well as new research findings and studies into preventing and controlling certain bacterias in CF.
Sorry Emily, but i think your being a bit HARSH by saying ( the whole dying young thing- it happens in most cases). It might happen in most cases to people diagnosed 20+yrs ago.
But i don't think it will be as common in the newly and most recent diagnosed. As they are dedected/diagnosed early they stand a much better chance at living a longer life, with treatment and newly developed medications. As well as new research findings and studies into preventing and controlling certain bacterias in CF.
But i don't think it will be as common in the newly and most recent diagnosed. As they are dedected/diagnosed early they stand a much better chance at living a longer life, with treatment and newly developed medications. As well as new research findings and studies into preventing and controlling certain bacterias in CF.
serendipity730
New member
I was never told, persay. I discovered online the "truth" about CF when I was approx. 13. I def. would not recommend this. I think that 8 is an okay time to start introducing some of the facts to your son.
serendipity730
New member
I was never told, persay. I discovered online the "truth" about CF when I was approx. 13. I def. would not recommend this. I think that 8 is an okay time to start introducing some of the facts to your son.
just want to add one more point, im not saying to book should tell him im saying an 8 year old should not think he is dieing weather he is or not, that is cruel, speaking as a mom myself... yes he should be very aware that he is different in a sense that he has to do all his meds to help him stay and be healthly,and to know he has a lung disease called cf.. but as he matures and understands everything will and should make sense.. thats from one caring mom to another..when you have children your job becomes to protect them not hurt them..when he asks ??? answer them in a way he can relate....
just want to add one more point, im not saying to book should tell him im saying an 8 year old should not think he is dieing weather he is or not, that is cruel, speaking as a mom myself... yes he should be very aware that he is different in a sense that he has to do all his meds to help him stay and be healthly,and to know he has a lung disease called cf.. but as he matures and understands everything will and should make sense.. thats from one caring mom to another..when you have children your job becomes to protect them not hurt them..when he asks ??? answer them in a way he can relate....
Protecting them doesn't mean not telling them the truth though. It would have been less painful to tell Ahava her dad wasn't going to die of Cf, but it would have been a lie. She was 3, and I thought she deserved to know at that age. And Ry was told the truth about his Cf at 4,5...somewhere around there. And most people do die young of CF. Most people don't approach anything I would even think of calling old. It sucks, but it's the truth.
Protecting them doesn't mean not telling them the truth though. It would have been less painful to tell Ahava her dad wasn't going to die of Cf, but it would have been a lie. She was 3, and I thought she deserved to know at that age. And Ry was told the truth about his Cf at 4,5...somewhere around there. And most people do die young of CF. Most people don't approach anything I would even think of calling old. It sucks, but it's the truth.
I am 33 and my parents were always up front about my disease. Sometimes I think my mom was too upfront about it. I lived my childhood thinking that if I ever got pregnant I would immediately die!!! But I survived 2 pregnancies and both of my children are CF free. I just think that a child shoud know whats going on but don't set unrealistic limitations. Let them know the severity but also the good things that do happen for CFers. Life is not over, you just have to live differently. And you do have to think ahead. If they find out later in life that things are more serious than they have been told they may resent you for sugar coating reality. Honesty is the best policy....... good luck!!!
I am 33 and my parents were always up front about my disease. Sometimes I think my mom was too upfront about it. I lived my childhood thinking that if I ever got pregnant I would immediately die!!! But I survived 2 pregnancies and both of my children are CF free. I just think that a child shoud know whats going on but don't set unrealistic limitations. Let them know the severity but also the good things that do happen for CFers. Life is not over, you just have to live differently. And you do have to think ahead. If they find out later in life that things are more serious than they have been told they may resent you for sugar coating reality. Honesty is the best policy....... good luck!!!
just want to comment to emily, are you mad at the world or just me, seems like you have something to say about alot of comments i make! sorry if i affend you, maybe one day when you have a child of your own, you will understand the whole pitcher, and not everyone is as sick as others , so i dont believe that your life is cut short i believe its what you make of it while you are here... sorry for the confussion....
just want to comment to emily, are you mad at the world or just me, seems like you have something to say about alot of comments i make! sorry if i affend you, maybe one day when you have a child of your own, you will understand the whole pitcher, and not everyone is as sick as others , so i dont believe that your life is cut short i believe its what you make of it while you are here... sorry for the confussion....