when your child finds out the median age

[windex125]

My parents did not tell me either, they said I had a small problem with my lungs which casued the constant coughing, I actually remember going to 5th grade grad. holding tissues just in case. It was not till I was a adult and out on my own that I got care at a CF center. My own thoughts are not to say anything now so many children are affected by this stamp on the head and so many of us live past the age... of what is recorded as we are all different in our diesease. I say hold off. Pat/56 CF

 

[windex125]

My parents did not tell me either, they said I had a small problem with my lungs which casued the constant coughing, I actually remember going to 5th grade grad. holding tissues just in case. It was not till I was a adult and out on my own that I got care at a CF center. My own thoughts are not to say anything now so many children are affected by this stamp on the head and so many of us live past the age... of what is recorded as we are all different in our diesease. I say hold off. Pat/56 CF

 

[2005CFmom]

My daughter was 8 when she was diagnosed.  We never specifically hid any information from her, but we didn't sit her down and have a "talk" with her about CF and death.  She was probably 10 or 11 when she asked about dying because of CF.  <div><br></div><div>Instead of just spewing out information, I talked to her to find out more specifically what she wanted to know.  Turns out she was wondering if she might die in the next few years.  I assured her that she was still very healthy (90-100% FEV1) and the doctors were not worried about her dying anytime soon.  </div><div><br></div><div>I let her know some people with CF die very young, and some live to be grandparents.  I also let her know that they do have an "average" age calculated but that it really does nothing to predict how long she will live.  She didn't want to know what the average age was, but I let her know that if she ever wants more information just to ask.  I am more than willing to share what she wants to know.</div><div><br></div><div>She is now 14 and still has not asked what the average age is.</div>

 

[2005CFmom]

My daughter was 8 when she was diagnosed. We never specifically hid any information from her, but we didn't sit her down and have a "talk" with her about CF and death. She was probably 10 or 11 when she asked about dying because of CF. <br>Instead of just spewing out information, I talked to her to find out more specifically what she wanted to know. Turns out she was wondering if she might die in the next few years. I assured her that she was still very healthy (90-100% FEV1) and the doctors were not worried about her dying anytime soon. <br>I let her know some people with CF die very young, and some live to be grandparents. I also let her know that they do have an "average" age calculated but that it really does nothing to predict how long she will live. She didn't want to know what the average age was, but I let her know that if she ever wants more information just to ask. I am more than willing to share what she wants to know.<br>She is now 14 and still has not asked what the average age is.

 

[2005CFmom]

My daughter was 8 when she was diagnosed. We never specifically hid any information from her, but we didn't sit her down and have a "talk" with her about CF and death. She was probably 10 or 11 when she asked about dying because of CF. <br>Instead of just spewing out information, I talked to her to find out more specifically what she wanted to know. Turns out she was wondering if she might die in the next few years. I assured her that she was still very healthy (90-100% FEV1) and the doctors were not worried about her dying anytime soon. <br>I let her know some people with CF die very young, and some live to be grandparents. I also let her know that they do have an "average" age calculated but that it really does nothing to predict how long she will live. She didn't want to know what the average age was, but I let her know that if she ever wants more information just to ask. I am more than willing to share what she wants to know.<br>She is now 14 and still has not asked what the average age is.

 

[2005CFmom]

sorry...double post

 

[2005CFmom]

sorry...double post

 

[2005CFmom]

sorry...double post

 

[JENNYC]

Thank you all so much for your advice. I don't plan on ever bringing the subject up, but I know that she will find out. Sounds like around 12 or 13. I thank you so much for all your advice. I am thinking that I should let her tell me what she wants to know and fill her full of optimistism, but also answer her questions honestly. I feel much better now hearing from all of you who have actually experienced it! Beautiful soul I have been reading your posts a lot on here and you seem like a very optimistic and happy go lucky person, I hope that my Abby can keep that brightness that you both seem to share right now, and 2005CFmom that sounds like exactly the route I need to take. I again thank you all for your advice, I love this forum and all of you for being so helpful and caring!!! If any others have more, I am an open book. <img src="i/expressions/face-icon-small-smile.gif" border="0"> God Bless you all!!!

 

[JENNYC]

Thank you all so much for your advice. I don't plan on ever bringing the subject up, but I know that she will find out. Sounds like around 12 or 13. I thank you so much for all your advice. I am thinking that I should let her tell me what she wants to know and fill her full of optimistism, but also answer her questions honestly. I feel much better now hearing from all of you who have actually experienced it! Beautiful soul I have been reading your posts a lot on here and you seem like a very optimistic and happy go lucky person, I hope that my Abby can keep that brightness that you both seem to share right now, and 2005CFmom that sounds like exactly the route I need to take. I again thank you all for your advice, I love this forum and all of you for being so helpful and caring!!! If any others have more, I am an open book. <img src="i/expressions/face-icon-small-smile.gif" border="0"> God Bless you all!!!

 

[JENNYC]

Thank you all so much for your advice. I don't plan on ever bringing the subject up, but I know that she will find out. Sounds like around 12 or 13. I thank you so much for all your advice. I am thinking that I should let her tell me what she wants to know and fill her full of optimistism, but also answer her questions honestly. I feel much better now hearing from all of you who have actually experienced it! Beautiful soul I have been reading your posts a lot on here and you seem like a very optimistic and happy go lucky person, I hope that my Abby can keep that brightness that you both seem to share right now, and 2005CFmom that sounds like exactly the route I need to take. I again thank you all for your advice, I love this forum and all of you for being so helpful and caring!!! If any others have more, I am an open book. <img src="i/expressions/face-icon-small-smile.gif" border="0"> God Bless you all!!!

 

[TestifyToLove]

Micah is too compromised by low IQ and Autism to understand death at all. So, it's really not an issue for him. However, his siblings have to grapple with what this means. I haven't directly told them. Basically, I answer their questions honestly when they come, and I don't seek out adding extra information.

Circumstances came up recently that I had to be more honest with my teenager about what is going on. However, outside of that, I don't burden the children with information they aren't seeking out, but I don't lie if they ask. There's little else I CAN do but to be there and support them as they need support.

 

[TestifyToLove]

Micah is too compromised by low IQ and Autism to understand death at all. So, it's really not an issue for him. However, his siblings have to grapple with what this means. I haven't directly told them. Basically, I answer their questions honestly when they come, and I don't seek out adding extra information.

Circumstances came up recently that I had to be more honest with my teenager about what is going on. However, outside of that, I don't burden the children with information they aren't seeking out, but I don't lie if they ask. There's little else I CAN do but to be there and support them as they need support.

 

[TestifyToLove]

Micah is too compromised by low IQ and Autism to understand death at all. So, it's really not an issue for him. However, his siblings have to grapple with what this means. I haven't directly told them. Basically, I answer their questions honestly when they come, and I don't seek out adding extra information.
<br />
<br />Circumstances came up recently that I had to be more honest with my teenager about what is going on. However, outside of that, I don't burden the children with information they aren't seeking out, but I don't lie if they ask. There's little else I CAN do but to be there and support them as they need support.

 

[Ratatosk]

DS is 8 and knows he has CF -- that he does treatments and takes medications to keep his lungs, etc. happy and healthy. We try to make sure he leads as normal as a life as possible -- goes to school, activities... He doesn't ask about CF, when he has doctor's appointments or feels off, we do ask him if he has any questions. He's been relatively healthy in the past, so it's rare that it comes up. We've been fortunate; however, at some point he's going to have questions or have to deal health issues or more than likely -- comments from others.

This summer he was hanging out with his 2 1/2 year old cousin playing video games and doing his vest. She likes to sit with him, watch movies, pats his hand... I was a little taken aback when she referred to his vest and said "M is sick". So she obviously asked her parents about it. I just smiled and said, we do his vest to him from getting sick.

 

[Ratatosk]

DS is 8 and knows he has CF -- that he does treatments and takes medications to keep his lungs, etc. happy and healthy. We try to make sure he leads as normal as a life as possible -- goes to school, activities... He doesn't ask about CF, when he has doctor's appointments or feels off, we do ask him if he has any questions. He's been relatively healthy in the past, so it's rare that it comes up. We've been fortunate; however, at some point he's going to have questions or have to deal health issues or more than likely -- comments from others.

This summer he was hanging out with his 2 1/2 year old cousin playing video games and doing his vest. She likes to sit with him, watch movies, pats his hand... I was a little taken aback when she referred to his vest and said "M is sick". So she obviously asked her parents about it. I just smiled and said, we do his vest to him from getting sick.

 

[Ratatosk]

DS is 8 and knows he has CF -- that he does treatments and takes medications to keep his lungs, etc. happy and healthy. We try to make sure he leads as normal as a life as possible -- goes to school, activities... He doesn't ask about CF, when he has doctor's appointments or feels off, we do ask him if he has any questions. He's been relatively healthy in the past, so it's rare that it comes up. We've been fortunate; however, at some point he's going to have questions or have to deal health issues or more than likely -- comments from others.
<br />
<br />This summer he was hanging out with his 2 1/2 year old cousin playing video games and doing his vest. She likes to sit with him, watch movies, pats his hand... I was a little taken aback when she referred to his vest and said "M is sick". So she obviously asked her parents about it. I just smiled and said, we do his vest to him from getting sick.

 

[tammykrumrey]

We have never sat down and talked about it either. We have, just over the years, discussed what having CF means to them at the time. What is a little different is that my nephew has CF, so they have always seen him struggle with his health, in ways that they had not had to do.

But, when they were little they always just thought CF was something that kids had (because they only saw themselves and their cousin with it). I do remember the day...although I don't remember how old they were, maybe 6 and 7, when we were in the car and for some reason discussing CF. I remember Hannah saying 'well when I grow up I won't have to do my lovepats (vest) or enzymes because mommys and daddys don't have CF'. I told them that they will still have to do those things because they will always have CF. And she looked over at her big sis, Kayla and said 'what? Did you know this?!' That's when I realized that they thought only kids had CF.

When they were in 2nd and 4th grade, we had a friend who lost her battle with CF at the age of 11. I told them time and time again that it wasn't going to happen to them. That she was much sicker than them and that they would be safe. They trusted me and never questioned their own battle with CF.

They have also attended CFF events where I have given speeches, and many times in those speeches I discuss things that could be a bit scary to them. But I have always made sure to discuss with them in advance at what those numbers mean to them.

I feel that we have done a great job at not letting them feel like they should fear the future. They don't worry about not growing old. They have tons of dreams and goals. We have open communication and they are treated like any one else their age<img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh, and one advantage we have as for dealing with what others say, espeically classmates, is that my girls have gone to a small private school. There is literally one class per grade...so the kids in Kayla's 8th grade class are the same ones that were in her 1st grade class (give or take a few over the years). So, their classmates have known about their CF since they were all in kindergarten, so they don't see them any different either<img src="i/expressions/face-icon-small-smile.gif" border="0"> They just all accept that Kayla and Hannah have CF and take enzymes at meals and cough more than others. And all the teachers have known them as long as well. Each year the school has a CF Awareness week and we raise money for the CFF <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

We have never sat down and talked about it either. We have, just over the years, discussed what having CF means to them at the time. What is a little different is that my nephew has CF, so they have always seen him struggle with his health, in ways that they had not had to do.

But, when they were little they always just thought CF was something that kids had (because they only saw themselves and their cousin with it). I do remember the day...although I don't remember how old they were, maybe 6 and 7, when we were in the car and for some reason discussing CF. I remember Hannah saying 'well when I grow up I won't have to do my lovepats (vest) or enzymes because mommys and daddys don't have CF'. I told them that they will still have to do those things because they will always have CF. And she looked over at her big sis, Kayla and said 'what? Did you know this?!' That's when I realized that they thought only kids had CF.

When they were in 2nd and 4th grade, we had a friend who lost her battle with CF at the age of 11. I told them time and time again that it wasn't going to happen to them. That she was much sicker than them and that they would be safe. They trusted me and never questioned their own battle with CF.

They have also attended CFF events where I have given speeches, and many times in those speeches I discuss things that could be a bit scary to them. But I have always made sure to discuss with them in advance at what those numbers mean to them.

I feel that we have done a great job at not letting them feel like they should fear the future. They don't worry about not growing old. They have tons of dreams and goals. We have open communication and they are treated like any one else their age<img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh, and one advantage we have as for dealing with what others say, espeically classmates, is that my girls have gone to a small private school. There is literally one class per grade...so the kids in Kayla's 8th grade class are the same ones that were in her 1st grade class (give or take a few over the years). So, their classmates have known about their CF since they were all in kindergarten, so they don't see them any different either<img src="i/expressions/face-icon-small-smile.gif" border="0"> They just all accept that Kayla and Hannah have CF and take enzymes at meals and cough more than others. And all the teachers have known them as long as well. Each year the school has a CF Awareness week and we raise money for the CFF <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

We have never sat down and talked about it either. We have, just over the years, discussed what having CF means to them at the time. What is a little different is that my nephew has CF, so they have always seen him struggle with his health, in ways that they had not had to do.
<br />
<br />But, when they were little they always just thought CF was something that kids had (because they only saw themselves and their cousin with it). I do remember the day...although I don't remember how old they were, maybe 6 and 7, when we were in the car and for some reason discussing CF. I remember Hannah saying 'well when I grow up I won't have to do my lovepats (vest) or enzymes because mommys and daddys don't have CF'. I told them that they will still have to do those things because they will always have CF. And she looked over at her big sis, Kayla and said 'what? Did you know this?!' That's when I realized that they thought only kids had CF.
<br />
<br />When they were in 2nd and 4th grade, we had a friend who lost her battle with CF at the age of 11. I told them time and time again that it wasn't going to happen to them. That she was much sicker than them and that they would be safe. They trusted me and never questioned their own battle with CF.
<br />
<br />They have also attended CFF events where I have given speeches, and many times in those speeches I discuss things that could be a bit scary to them. But I have always made sure to discuss with them in advance at what those numbers mean to them.
<br />
<br />I feel that we have done a great job at not letting them feel like they should fear the future. They don't worry about not growing old. They have tons of dreams and goals. We have open communication and they are treated like any one else their age<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Oh, and one advantage we have as for dealing with what others say, espeically classmates, is that my girls have gone to a small private school. There is literally one class per grade...so the kids in Kayla's 8th grade class are the same ones that were in her 1st grade class (give or take a few over the years). So, their classmates have known about their CF since they were all in kindergarten, so they don't see them any different either<img src="i/expressions/face-icon-small-smile.gif" border="0"> They just all accept that Kayla and Hannah have CF and take enzymes at meals and cough more than others. And all the teachers have known them as long as well. Each year the school has a CF Awareness week and we raise money for the CFF <img src="i/expressions/face-icon-small-smile.gif" border="0">