When and how to tell my son?

[biz]

first i want to say this forum is truly a blessing. the wealth of knowledge, understanding and sympathy is great and i feel i wouldnt be stronger today for my boy if not for this site. ok having said that the latest thing that keeps me awake at night is how am i going to tell my son that he has this disease. i look at that question and it is so complex it frustrates me. so ive been thinking about easier questions to get thru first. here goes:

at what age do they start to ask questions about why the treatments and the enzymes and all the extras he has to get?
is it early ages and they are curious about what is happening?
and what do i say how do i explain it to (probably) a three year old so that they get some understanding of how important all this is?
and as they get older and smarter, like grade school how do i explain it all over again?
are they mad? are they scared? will he cry and ask why him?
how do i hold back my emotions, so i dont frighten him?

these are just the few questions that i have no idea what to say about. so if you could help me i would really appresiate it and maybe it wont be as hard and heartbreaking as i think it will be. thank you

Elizabeth

 

[biz]

first i want to say this forum is truly a blessing. the wealth of knowledge, understanding and sympathy is great and i feel i wouldnt be stronger today for my boy if not for this site. ok having said that the latest thing that keeps me awake at night is how am i going to tell my son that he has this disease. i look at that question and it is so complex it frustrates me. so ive been thinking about easier questions to get thru first. here goes:

at what age do they start to ask questions about why the treatments and the enzymes and all the extras he has to get?
is it early ages and they are curious about what is happening?
and what do i say how do i explain it to (probably) a three year old so that they get some understanding of how important all this is?
and as they get older and smarter, like grade school how do i explain it all over again?
are they mad? are they scared? will he cry and ask why him?
how do i hold back my emotions, so i dont frighten him?

these are just the few questions that i have no idea what to say about. so if you could help me i would really appresiate it and maybe it wont be as hard and heartbreaking as i think it will be. thank you

Elizabeth

 

[biz]

first i want to say this forum is truly a blessing. the wealth of knowledge, understanding and sympathy is great and i feel i wouldnt be stronger today for my boy if not for this site. ok having said that the latest thing that keeps me awake at night is how am i going to tell my son that he has this disease. i look at that question and it is so complex it frustrates me. so ive been thinking about easier questions to get thru first. here goes:

at what age do they start to ask questions about why the treatments and the enzymes and all the extras he has to get?
is it early ages and they are curious about what is happening?
and what do i say how do i explain it to (probably) a three year old so that they get some understanding of how important all this is?
and as they get older and smarter, like grade school how do i explain it all over again?
are they mad? are they scared? will he cry and ask why him?
how do i hold back my emotions, so i dont frighten him?

these are just the few questions that i have no idea what to say about. so if you could help me i would really appresiate it and maybe it wont be as hard and heartbreaking as i think it will be. thank you

Elizabeth

 

[Emily65Roses]

My little bit of important advice... when the kid asks a question, answer it. Answer it in age appropriate terms, but be accurate. If he's 3, tell him he's different than other kids. He's special, and he needs special medicines to keep him as healthy as possible. When he gets older and probes and asks "Well why am I special?" or whatever, again, just answer age-appropriately. Add more details so he understands why he's special, but keep it to something he can understand at that age. I wouldn't say you explain it <i>all over again</i>, so much as <b>elaborate on it</b> each time he asks.

Kids are amazingly resilient. If he asks a question, you can bet he's ready to hear the answer. He may be mad or depressed or wonder why he has to be different or whatever. It's natural. I'm sure I did as a child. But then he'll get over it, realize it's just how it is, and learn to accept himself as is. It sucks, but it makes him unique. I liked being the unusual kid. Still do. Hahaha.

 

[Emily65Roses]

My little bit of important advice... when the kid asks a question, answer it. Answer it in age appropriate terms, but be accurate. If he's 3, tell him he's different than other kids. He's special, and he needs special medicines to keep him as healthy as possible. When he gets older and probes and asks "Well why am I special?" or whatever, again, just answer age-appropriately. Add more details so he understands why he's special, but keep it to something he can understand at that age. I wouldn't say you explain it <i>all over again</i>, so much as <b>elaborate on it</b> each time he asks.

Kids are amazingly resilient. If he asks a question, you can bet he's ready to hear the answer. He may be mad or depressed or wonder why he has to be different or whatever. It's natural. I'm sure I did as a child. But then he'll get over it, realize it's just how it is, and learn to accept himself as is. It sucks, but it makes him unique. I liked being the unusual kid. Still do. Hahaha.

 

[Emily65Roses]

My little bit of important advice... when the kid asks a question, answer it. Answer it in age appropriate terms, but be accurate. If he's 3, tell him he's different than other kids. He's special, and he needs special medicines to keep him as healthy as possible. When he gets older and probes and asks "Well why am I special?" or whatever, again, just answer age-appropriately. Add more details so he understands why he's special, but keep it to something he can understand at that age. I wouldn't say you explain it <i>all over again</i>, so much as <b>elaborate on it</b> each time he asks.

Kids are amazingly resilient. If he asks a question, you can bet he's ready to hear the answer. He may be mad or depressed or wonder why he has to be different or whatever. It's natural. I'm sure I did as a child. But then he'll get over it, realize it's just how it is, and learn to accept himself as is. It sucks, but it makes him unique. I liked being the unusual kid. Still do. Hahaha.

 

[hopefullmom]

I know exactly how your feeling. My little girl is 4 and is going to pre k, I have been speaking about the disease trying to raise money for research. I was talking with some 4th and 5th graders at her school and she was there with me, and the kids had lots of questions. I answered them as best as I could with Maci beside me, so when we got to the car Maci said " mommy are you talking about my Maci" meaning herself. I said yes trying to hold back the tears, and then she said why did you tell them about me. I did not know how to answer that so I said because the kids need to know how important it is for some children to work very hard to not get sick and have to go back in the hospital. I worry daily about what I said to her and if it was the right thing. I always tell her it is very important to do all her treatment to keep the germs out of her lungs, but if you ever come up with better answers I would love to hear them. I do feel that Maci knows she is somewhat diffrent from her other friends, especially the size of her.

 

[hopefullmom]

I know exactly how your feeling. My little girl is 4 and is going to pre k, I have been speaking about the disease trying to raise money for research. I was talking with some 4th and 5th graders at her school and she was there with me, and the kids had lots of questions. I answered them as best as I could with Maci beside me, so when we got to the car Maci said " mommy are you talking about my Maci" meaning herself. I said yes trying to hold back the tears, and then she said why did you tell them about me. I did not know how to answer that so I said because the kids need to know how important it is for some children to work very hard to not get sick and have to go back in the hospital. I worry daily about what I said to her and if it was the right thing. I always tell her it is very important to do all her treatment to keep the germs out of her lungs, but if you ever come up with better answers I would love to hear them. I do feel that Maci knows she is somewhat diffrent from her other friends, especially the size of her.

 

[hopefullmom]

I know exactly how your feeling. My little girl is 4 and is going to pre k, I have been speaking about the disease trying to raise money for research. I was talking with some 4th and 5th graders at her school and she was there with me, and the kids had lots of questions. I answered them as best as I could with Maci beside me, so when we got to the car Maci said " mommy are you talking about my Maci" meaning herself. I said yes trying to hold back the tears, and then she said why did you tell them about me. I did not know how to answer that so I said because the kids need to know how important it is for some children to work very hard to not get sick and have to go back in the hospital. I worry daily about what I said to her and if it was the right thing. I always tell her it is very important to do all her treatment to keep the germs out of her lungs, but if you ever come up with better answers I would love to hear them. I do feel that Maci knows she is somewhat diffrent from her other friends, especially the size of her.

 

[lflatford]

this one is a tricky question, because different families face different obsticles. With Avery who is 3, it has been alot easier than what either one of us thought it would be. One day my wife just started talking to her when she was 2 years old in the bath tub. She told her why she has to take enzymes, then later we told her why she has to do The Vest. Now if you ask her why she has to do so many meds she will tell you because she has 65 Roses. Now does she know that it is a disease, No. That part is maybe a few years away. But it has been easy in part because we have a 5 year old with CF that lives across the street that Avery looks up to. So it makes it easy when we can explain that she also has CF, and does all of the same stuff. What I don't look forward to is the day when she says "daddy am I going to die" that is a answer that I know that I will never be ready to answer. But the beauty of CF if you can say that for our children to be born with this disease, I am grateful that so many promising things are out there to better their longterm lives. I am confident that when she gets to be at the age to know about diseases there will be even more positive changes for those with CF.

Chuck daddy to Avery 3 years old with CF , and Rhett 2 Carrier

 

[lflatford]

this one is a tricky question, because different families face different obsticles. With Avery who is 3, it has been alot easier than what either one of us thought it would be. One day my wife just started talking to her when she was 2 years old in the bath tub. She told her why she has to take enzymes, then later we told her why she has to do The Vest. Now if you ask her why she has to do so many meds she will tell you because she has 65 Roses. Now does she know that it is a disease, No. That part is maybe a few years away. But it has been easy in part because we have a 5 year old with CF that lives across the street that Avery looks up to. So it makes it easy when we can explain that she also has CF, and does all of the same stuff. What I don't look forward to is the day when she says "daddy am I going to die" that is a answer that I know that I will never be ready to answer. But the beauty of CF if you can say that for our children to be born with this disease, I am grateful that so many promising things are out there to better their longterm lives. I am confident that when she gets to be at the age to know about diseases there will be even more positive changes for those with CF.

Chuck daddy to Avery 3 years old with CF , and Rhett 2 Carrier

 

[lflatford]

this one is a tricky question, because different families face different obsticles. With Avery who is 3, it has been alot easier than what either one of us thought it would be. One day my wife just started talking to her when she was 2 years old in the bath tub. She told her why she has to take enzymes, then later we told her why she has to do The Vest. Now if you ask her why she has to do so many meds she will tell you because she has 65 Roses. Now does she know that it is a disease, No. That part is maybe a few years away. But it has been easy in part because we have a 5 year old with CF that lives across the street that Avery looks up to. So it makes it easy when we can explain that she also has CF, and does all of the same stuff. What I don't look forward to is the day when she says "daddy am I going to die" that is a answer that I know that I will never be ready to answer. But the beauty of CF if you can say that for our children to be born with this disease, I am grateful that so many promising things are out there to better their longterm lives. I am confident that when she gets to be at the age to know about diseases there will be even more positive changes for those with CF.

Chuck daddy to Avery 3 years old with CF , and Rhett 2 Carrier

 

[amysmom]

I think it's best to take each question as it comes and answer it appropriate to the child's age. Our daughter is 25 and we've been 'talking' about CF from the very beginning. I would answer things like, 'you have to take this medicine because you have CF' and end it there. If she asked a second question, I would answer that straightforward (according to her age) too. I would purposely let her hear me saying things similiar to that, very matter-of-factly, to other people to normalize it. It WAS her life and the sooner she accepted it, the sooner she could focus on everything else that had nothing to do with CF. Our attitude was, CF is a part of your life, let's make the best of it and get on with the rest. When she was 6 years old, lst grade, a friend of hers told her that she 'was going to die'. Ugh! When she came home and asked me if she was, I told her simply that some people with CF die. I told her, you're fine and that's not something you have to worry about. When Amy was 15, the seriousness of CF really started to hit her. She had a hard time realizing that (for a while), but I continued to keep her involved in the rest of her life and kept a common sense approach - 'we'll deal with things when they come up. Right now, you have friends, commitments, school, etc..' I think that if you keep it an open subject from the very beginning, there is no crying, anger and re-explaining. They've always known and they learn more details naturally as they get older. They don't even realize what they didn't know because it has all been so natural (sort of like talking about sex - happens naturally). Hope this helps! I know it's terrifying. I agonized over this whole subject too but it really isn't as bad as it seems like it's going to be.

 

[amysmom]

I think it's best to take each question as it comes and answer it appropriate to the child's age. Our daughter is 25 and we've been 'talking' about CF from the very beginning. I would answer things like, 'you have to take this medicine because you have CF' and end it there. If she asked a second question, I would answer that straightforward (according to her age) too. I would purposely let her hear me saying things similiar to that, very matter-of-factly, to other people to normalize it. It WAS her life and the sooner she accepted it, the sooner she could focus on everything else that had nothing to do with CF. Our attitude was, CF is a part of your life, let's make the best of it and get on with the rest. When she was 6 years old, lst grade, a friend of hers told her that she 'was going to die'. Ugh! When she came home and asked me if she was, I told her simply that some people with CF die. I told her, you're fine and that's not something you have to worry about. When Amy was 15, the seriousness of CF really started to hit her. She had a hard time realizing that (for a while), but I continued to keep her involved in the rest of her life and kept a common sense approach - 'we'll deal with things when they come up. Right now, you have friends, commitments, school, etc..' I think that if you keep it an open subject from the very beginning, there is no crying, anger and re-explaining. They've always known and they learn more details naturally as they get older. They don't even realize what they didn't know because it has all been so natural (sort of like talking about sex - happens naturally). Hope this helps! I know it's terrifying. I agonized over this whole subject too but it really isn't as bad as it seems like it's going to be.

 

[amysmom]

I think it's best to take each question as it comes and answer it appropriate to the child's age. Our daughter is 25 and we've been 'talking' about CF from the very beginning. I would answer things like, 'you have to take this medicine because you have CF' and end it there. If she asked a second question, I would answer that straightforward (according to her age) too. I would purposely let her hear me saying things similiar to that, very matter-of-factly, to other people to normalize it. It WAS her life and the sooner she accepted it, the sooner she could focus on everything else that had nothing to do with CF. Our attitude was, CF is a part of your life, let's make the best of it and get on with the rest. When she was 6 years old, lst grade, a friend of hers told her that she 'was going to die'. Ugh! When she came home and asked me if she was, I told her simply that some people with CF die. I told her, you're fine and that's not something you have to worry about. When Amy was 15, the seriousness of CF really started to hit her. She had a hard time realizing that (for a while), but I continued to keep her involved in the rest of her life and kept a common sense approach - 'we'll deal with things when they come up. Right now, you have friends, commitments, school, etc..' I think that if you keep it an open subject from the very beginning, there is no crying, anger and re-explaining. They've always known and they learn more details naturally as they get older. They don't even realize what they didn't know because it has all been so natural (sort of like talking about sex - happens naturally). Hope this helps! I know it's terrifying. I agonized over this whole subject too but it really isn't as bad as it seems like it's going to be.

 

[Samsmom]

I don't know how to tell a young child about cf because our daughter was diagnosed at 12, and that was hard. We had to explain to a little girl that she had this disease and what it would do and how it could affect her whole life. Since then she had periodically come to me and asked questions that have quite honestly surprised me, but I believe you should be honest with your children, but gentle with these matters. I would start my giving a young child spoonfuls of info. here and there. When he or she starts asking questions you will know it is time for more info. Good luck!!

 

[Samsmom]

I don't know how to tell a young child about cf because our daughter was diagnosed at 12, and that was hard. We had to explain to a little girl that she had this disease and what it would do and how it could affect her whole life. Since then she had periodically come to me and asked questions that have quite honestly surprised me, but I believe you should be honest with your children, but gentle with these matters. I would start my giving a young child spoonfuls of info. here and there. When he or she starts asking questions you will know it is time for more info. Good luck!!

 

[Samsmom]

I don't know how to tell a young child about cf because our daughter was diagnosed at 12, and that was hard. We had to explain to a little girl that she had this disease and what it would do and how it could affect her whole life. Since then she had periodically come to me and asked questions that have quite honestly surprised me, but I believe you should be honest with your children, but gentle with these matters. I would start my giving a young child spoonfuls of info. here and there. When he or she starts asking questions you will know it is time for more info. Good luck!!

 

[karon72]

We are gradually telling Erin, but she is really finding out on her own. She knows that her two little best friends don't have to do the Vest or take enzymes. She did ask "why" and I told her in simple terms that everyone's body is different and hers requires medicines so she won't be uncomfortable (tummy) and the has to do the Vest so her lungs don't get sick. She is familiar with the term cystic fibrosis, and is gradually learning that she has it. Erin also has asthma (like many of you), but so does her best friend. The friend's mother let Erin see her doing a neb treatment once during a playdate & Erin was telling her "I do that too"! She is only 5, so doesn't understand the whole picture. I do worry about that, but we will handle each question one step at a time. We also take the matter of fact approach and give her age appropriate responses. I grew up in a very dramatic house (dealing with health issues) and I just don't want that for her. Cf is a part of her and a part of our family, but don't want it to run our lives all the time. We are a cf family, so we don't want Erin to ever feel alone, but I know she will have to deal with this later on.

The tough one (so far) was her older brother. We didn't want to scare him, he was only 7 when we found out, so we never sat him down with a "talk". We were trying to handle our feelings and didn't want him to treat her any different or look at her anyway than his little sister <img src="i/expressions/face-icon-small-smile.gif" border="0">. He has been very involved with fundraisers, cf walks, passing out flyers and very active in her treaments. He would get the extra tv time if he sat with her during the vest <img src="i/expressions/face-icon-small-smile.gif" border="0">. By the age of 8, he knew all the settings & would set out her enzymes at dinner. It is amazing what kids pick up. She was hospitalized twice & he knew we have to be extra careful with washing hands and our daily stuff. He visits her at the hospital and is a part of her care. When he hears her sick cough, he just knows there is a lot of extra treaments about to happen. But last summer (he was 9), we were watching a clip on the computer about the girl w/cf who swam laps to raise money. We were showing Erin & Jon that cf doesn't have to control your life. Well, after the clip the facts about cf were displayed about it being the #1 genetic killer of children, the life expectancy and so on. Jon's eyes were huge...he had no idea that his sister could die from cf. Watching him come to grasp with some of the information was heartbreaking. I explained to him about all the treatments they have come up with and how hard doctors and researchers are working to help Erin live a long, happy life. I don't know if he was mad at us for not telling him, but he was down for a few days. His dad & I were there if he had any questions, but let him deal with it. Within a few days, he was back to treating her like a little sister. I don't think he is as dismissive about cf now, he knows why we treat her colds and coughs so aggressive.

Sorry this was so long!

 

[karon72]

We are gradually telling Erin, but she is really finding out on her own. She knows that her two little best friends don't have to do the Vest or take enzymes. She did ask "why" and I told her in simple terms that everyone's body is different and hers requires medicines so she won't be uncomfortable (tummy) and the has to do the Vest so her lungs don't get sick. She is familiar with the term cystic fibrosis, and is gradually learning that she has it. Erin also has asthma (like many of you), but so does her best friend. The friend's mother let Erin see her doing a neb treatment once during a playdate & Erin was telling her "I do that too"! She is only 5, so doesn't understand the whole picture. I do worry about that, but we will handle each question one step at a time. We also take the matter of fact approach and give her age appropriate responses. I grew up in a very dramatic house (dealing with health issues) and I just don't want that for her. Cf is a part of her and a part of our family, but don't want it to run our lives all the time. We are a cf family, so we don't want Erin to ever feel alone, but I know she will have to deal with this later on.

The tough one (so far) was her older brother. We didn't want to scare him, he was only 7 when we found out, so we never sat him down with a "talk". We were trying to handle our feelings and didn't want him to treat her any different or look at her anyway than his little sister <img src="i/expressions/face-icon-small-smile.gif" border="0">. He has been very involved with fundraisers, cf walks, passing out flyers and very active in her treaments. He would get the extra tv time if he sat with her during the vest <img src="i/expressions/face-icon-small-smile.gif" border="0">. By the age of 8, he knew all the settings & would set out her enzymes at dinner. It is amazing what kids pick up. She was hospitalized twice & he knew we have to be extra careful with washing hands and our daily stuff. He visits her at the hospital and is a part of her care. When he hears her sick cough, he just knows there is a lot of extra treaments about to happen. But last summer (he was 9), we were watching a clip on the computer about the girl w/cf who swam laps to raise money. We were showing Erin & Jon that cf doesn't have to control your life. Well, after the clip the facts about cf were displayed about it being the #1 genetic killer of children, the life expectancy and so on. Jon's eyes were huge...he had no idea that his sister could die from cf. Watching him come to grasp with some of the information was heartbreaking. I explained to him about all the treatments they have come up with and how hard doctors and researchers are working to help Erin live a long, happy life. I don't know if he was mad at us for not telling him, but he was down for a few days. His dad & I were there if he had any questions, but let him deal with it. Within a few days, he was back to treating her like a little sister. I don't think he is as dismissive about cf now, he knows why we treat her colds and coughs so aggressive.

Sorry this was so long!