When and how to tell my son?

[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!

 

[Rebjane]

Like all the other posters said, we answer the questions as they come up. I try to be very matter of fact. Questions come up from my older child(no CF) as well and I try to remember that questions for an 8 year old, the 8 year old is wondering about himself and how this will all effect him and not just his sister with CF. I let my son without CF know that he does not have CF, can not catch it and will never get CF himself. Now my 4 year old, she knows she takes enzymes, the VEST, nebs and why. If someone asked her why she takes her enzymes she'll say to keep me healthy. If someone asked her why she does nebs and VEST, she'll say to keep my lungs healthy. Although, I do get the" when I'm big like you mommy I won't need enzymes" I often have to remind her she will always need these treatments. But I think her behavior is normal. She wants to be like mommy. Kids will take your lead. I make it so these things are a normal part of our life and hopefullyso will my daughter.

 

[Rebjane]

Like all the other posters said, we answer the questions as they come up. I try to be very matter of fact. Questions come up from my older child(no CF) as well and I try to remember that questions for an 8 year old, the 8 year old is wondering about himself and how this will all effect him and not just his sister with CF. I let my son without CF know that he does not have CF, can not catch it and will never get CF himself. Now my 4 year old, she knows she takes enzymes, the VEST, nebs and why. If someone asked her why she takes her enzymes she'll say to keep me healthy. If someone asked her why she does nebs and VEST, she'll say to keep my lungs healthy. Although, I do get the" when I'm big like you mommy I won't need enzymes" I often have to remind her she will always need these treatments. But I think her behavior is normal. She wants to be like mommy. Kids will take your lead. I make it so these things are a normal part of our life and hopefullyso will my daughter.

 

[Rebjane]

Like all the other posters said, we answer the questions as they come up. I try to be very matter of fact. Questions come up from my older child(no CF) as well and I try to remember that questions for an 8 year old, the 8 year old is wondering about himself and how this will all effect him and not just his sister with CF. I let my son without CF know that he does not have CF, can not catch it and will never get CF himself. Now my 4 year old, she knows she takes enzymes, the VEST, nebs and why. If someone asked her why she takes her enzymes she'll say to keep me healthy. If someone asked her why she does nebs and VEST, she'll say to keep my lungs healthy. Although, I do get the" when I'm big like you mommy I won't need enzymes" I often have to remind her she will always need these treatments. But I think her behavior is normal. She wants to be like mommy. Kids will take your lead. I make it so these things are a normal part of our life and hopefullyso will my daughter.

 

[JazzysMom]

I agree pretty much with everyone. Your lead is what our son will follow. If you are hysterical etc then he will feel & follow that anxiety. Be direct, simple and matter of factly about any answers you must give. NO need to unload the whole boat of info at one time. Age appropriate answers for the questions he is asking. When it gets to the "will I die" question then the first thing is that EVERYONE dies at some point. Depending on his healthy etc will be what dictates the rest of that answer! Its not easy no matter what your approach, but isnt something that will go away!

 

[JazzysMom]

I agree pretty much with everyone. Your lead is what our son will follow. If you are hysterical etc then he will feel & follow that anxiety. Be direct, simple and matter of factly about any answers you must give. NO need to unload the whole boat of info at one time. Age appropriate answers for the questions he is asking. When it gets to the "will I die" question then the first thing is that EVERYONE dies at some point. Depending on his healthy etc will be what dictates the rest of that answer! Its not easy no matter what your approach, but isnt something that will go away!

 

[JazzysMom]

I agree pretty much with everyone. Your lead is what our son will follow. If you are hysterical etc then he will feel & follow that anxiety. Be direct, simple and matter of factly about any answers you must give. NO need to unload the whole boat of info at one time. Age appropriate answers for the questions he is asking. When it gets to the "will I die" question then the first thing is that EVERYONE dies at some point. Depending on his healthy etc will be what dictates the rest of that answer! Its not easy no matter what your approach, but isnt something that will go away!

 

[kayleesgrandma]

Great question, and such good answers too. I just tell Kaylee that if she doesn't do her vest and enzymes and vitamins she will get very sick, and we don't want her to go to the hospital. Jaykub, her older bro, is 8, so we haven't told him the whole story yet, except that we are trying to keep Kaylee as healthy as we can. Taking it one question at a time is the best answer so far. I hate this haeart-breaking disease!

 

[kayleesgrandma]

Great question, and such good answers too. I just tell Kaylee that if she doesn't do her vest and enzymes and vitamins she will get very sick, and we don't want her to go to the hospital. Jaykub, her older bro, is 8, so we haven't told him the whole story yet, except that we are trying to keep Kaylee as healthy as we can. Taking it one question at a time is the best answer so far. I hate this haeart-breaking disease!

 

[kayleesgrandma]

Great question, and such good answers too. I just tell Kaylee that if she doesn't do her vest and enzymes and vitamins she will get very sick, and we don't want her to go to the hospital. Jaykub, her older bro, is 8, so we haven't told him the whole story yet, except that we are trying to keep Kaylee as healthy as we can. Taking it one question at a time is the best answer so far. I hate this haeart-breaking disease!

 

[tammykrumrey]

Yes, I too agree with what everyone else has pretty much said. We answer things as they come up. My girls always have thought that when they became grown ups that they would not longer have CF...like you outgrew it or something. They see Mommy and Daddy don't have it, so I won't either. That is the new 'fact' for them to understand right now. My older one is just now starting to comprehend the real consequences of having CF. She had recently asked me about how I found out that she had it. And I explained the entire story about her and then finding out about her little sister Hannah. She was truely interested. It helps to wait until they have questions themselves, because then they will really care and listen to the answers. Just take it in baby steps<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Yes, I too agree with what everyone else has pretty much said. We answer things as they come up. My girls always have thought that when they became grown ups that they would not longer have CF...like you outgrew it or something. They see Mommy and Daddy don't have it, so I won't either. That is the new 'fact' for them to understand right now. My older one is just now starting to comprehend the real consequences of having CF. She had recently asked me about how I found out that she had it. And I explained the entire story about her and then finding out about her little sister Hannah. She was truely interested. It helps to wait until they have questions themselves, because then they will really care and listen to the answers. Just take it in baby steps<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Yes, I too agree with what everyone else has pretty much said. We answer things as they come up. My girls always have thought that when they became grown ups that they would not longer have CF...like you outgrew it or something. They see Mommy and Daddy don't have it, so I won't either. That is the new 'fact' for them to understand right now. My older one is just now starting to comprehend the real consequences of having CF. She had recently asked me about how I found out that she had it. And I explained the entire story about her and then finding out about her little sister Hannah. She was truely interested. It helps to wait until they have questions themselves, because then they will really care and listen to the answers. Just take it in baby steps<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EmilysMom]

I don't know how old your child is, but Emily has always known that CF was a part of her life and as she stated when she asked a question, she got an age-appropriate answer. We didn't elaborate, but answered her questions honestly and openly. It didn't make sense to try and hide it because it was with her every day and she was always the "different" one at school with meds and being out of school for clinic visits or because she was sick. And she's right, she liked being the different one She almost thrived on it !!

 

[EmilysMom]

I don't know how old your child is, but Emily has always known that CF was a part of her life and as she stated when she asked a question, she got an age-appropriate answer. We didn't elaborate, but answered her questions honestly and openly. It didn't make sense to try and hide it because it was with her every day and she was always the "different" one at school with meds and being out of school for clinic visits or because she was sick. And she's right, she liked being the different one She almost thrived on it !!

 

[EmilysMom]

I don't know how old your child is, but Emily has always known that CF was a part of her life and as she stated when she asked a question, she got an age-appropriate answer. We didn't elaborate, but answered her questions honestly and openly. It didn't make sense to try and hide it because it was with her every day and she was always the "different" one at school with meds and being out of school for clinic visits or because she was sick. And she's right, she liked being the different one She almost thrived on it !!

 

[Ratatosk]

We just figure we'll let DS believe that all the other kids do their vest & nebs at home before and afterschool and before bed. Heck, sometimes he INSISTS that I have an enzyme if I'm having a snack & glass of milk with him.

Seriously, we address the questions as they come about. He LOVES the mucinex commercial with the slimey green guys, so we tell him he needs to the the vest to get the booger monsters out of there.

 

[Ratatosk]

We just figure we'll let DS believe that all the other kids do their vest & nebs at home before and afterschool and before bed. Heck, sometimes he INSISTS that I have an enzyme if I'm having a snack & glass of milk with him.

Seriously, we address the questions as they come about. He LOVES the mucinex commercial with the slimey green guys, so we tell him he needs to the the vest to get the booger monsters out of there.

 

[Ratatosk]

We just figure we'll let DS believe that all the other kids do their vest & nebs at home before and afterschool and before bed. Heck, sometimes he INSISTS that I have an enzyme if I'm having a snack & glass of milk with him.

Seriously, we address the questions as they come about. He LOVES the mucinex commercial with the slimey green guys, so we tell him he needs to the the vest to get the booger monsters out of there.

 

[DarceyMaysey]

I am the one with CF my six-year old son doesn't have it. Sometimes I get upset because I feel like my mom tells my son too much. For example, he came home from her house one time very upset because I was going to die. He sees me doing my meds, etc. but I don't think a child that young needs to be concerned about losing his mother.