How do you tell your 11yr old (going on20) about her disease i the future?

[mom2lillian]

As an adult living with CF and as and adult who did not know I had CF as a kid I woudl like to say that when you do chat with her here and there to stress that this disease only holds her back in as much as you and she let it. I dont mean not going around smoke etc. I mean stress to her she can do anythign she puts her mind to, empower her so that she wants to take care of herself to 'prove' seh can do it.

As she gets older try to teach her bit by bit to live with teh disease but not limited by the disease, to keep the diesease in mind when making decisions (career choices etc) but not to let her disease make decisions for her.

If we all went by what was said when we were kids we would not attend college, hold down full time jobs, or have children becuase that was not the norm then. Now it is getting to be. So let her know that just because that is the mean age now and xyz is what most peopel can do now has nothting to do with what SHE can do, let her make her own new 'norm'.

 

[mom2lillian]

As an adult living with CF and as and adult who did not know I had CF as a kid I woudl like to say that when you do chat with her here and there to stress that this disease only holds her back in as much as you and she let it. I dont mean not going around smoke etc. I mean stress to her she can do anythign she puts her mind to, empower her so that she wants to take care of herself to 'prove' seh can do it.

As she gets older try to teach her bit by bit to live with teh disease but not limited by the disease, to keep the diesease in mind when making decisions (career choices etc) but not to let her disease make decisions for her.

If we all went by what was said when we were kids we would not attend college, hold down full time jobs, or have children becuase that was not the norm then. Now it is getting to be. So let her know that just because that is the mean age now and xyz is what most peopel can do now has nothting to do with what SHE can do, let her make her own new 'norm'.

 

[kayleesgrandma]

I wonder about this too, because Kaylee's brother who is 8 will find out sometime soon, and he is so sensitive . . . so it's hard to tell the siblings too, I think. But looking around here on the site, there are so many people who are proactive in their healthcare here, and I think that will help her to see that there is no right answer for age. Just give it your all, and live out loud!

 

[kayleesgrandma]

I wonder about this too, because Kaylee's brother who is 8 will find out sometime soon, and he is so sensitive . . . so it's hard to tell the siblings too, I think. But looking around here on the site, there are so many people who are proactive in their healthcare here, and I think that will help her to see that there is no right answer for age. Just give it your all, and live out loud!

 

[kayleesgrandma]

I wonder about this too, because Kaylee's brother who is 8 will find out sometime soon, and he is so sensitive . . . so it's hard to tell the siblings too, I think. But looking around here on the site, there are so many people who are proactive in their healthcare here, and I think that will help her to see that there is no right answer for age. Just give it your all, and live out loud!

 

[BlessedbymyGirl36]

Nicole and Terri, thank you so much for your reply.. I can't even say it's a relief to be able to speak to all of you, because it more feels like a door that has been opened, such as when Erin was diagnosed. The unreal thing to me is why i waited so long to find a avenue for my questions, fears, and support I have to give. I do beleive that everything happens for a reason, so I am here and so is Erin for a reason. I just want to thank you all for posting and lending your advice and experiences of your family. I am so thankful to have access to you all. Have a great Night and God Bless. p.s. One of the most thankful things I'm greatful for is Erin's heart, when I had a discussion with her this evening, I told her if she wanted to come on here and join the kids's section that I would support her 100%, however she needed to know * and we've always told her* that her level of CF compared to some others is different, just as we all are different, when she heard this she starting crying and my fears started coming true, I had scared her, *I felt as though i'd failed* But when I asked her why she was crying *which part hit her the hardest* she said it was because it wasn't fair that all these children and people have to deal with this disease. I told her she could do a fundraiser at her school or we could do it through our church, *advice i've recieved on here*, which brings me back to the point of finding this outlet/support family for a reason at this time. Thanks to all of you and I apologise for the lengthiness <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take Care, xNichole & Erin Joan

 

[BlessedbymyGirl36]

Nicole and Terri, thank you so much for your reply.. I can't even say it's a relief to be able to speak to all of you, because it more feels like a door that has been opened, such as when Erin was diagnosed. The unreal thing to me is why i waited so long to find a avenue for my questions, fears, and support I have to give. I do beleive that everything happens for a reason, so I am here and so is Erin for a reason. I just want to thank you all for posting and lending your advice and experiences of your family. I am so thankful to have access to you all. Have a great Night and God Bless. p.s. One of the most thankful things I'm greatful for is Erin's heart, when I had a discussion with her this evening, I told her if she wanted to come on here and join the kids's section that I would support her 100%, however she needed to know * and we've always told her* that her level of CF compared to some others is different, just as we all are different, when she heard this she starting crying and my fears started coming true, I had scared her, *I felt as though i'd failed* But when I asked her why she was crying *which part hit her the hardest* she said it was because it wasn't fair that all these children and people have to deal with this disease. I told her she could do a fundraiser at her school or we could do it through our church, *advice i've recieved on here*, which brings me back to the point of finding this outlet/support family for a reason at this time. Thanks to all of you and I apologise for the lengthiness <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take Care, xNichole & Erin Joan

 

[BlessedbymyGirl36]

Nicole and Terri, thank you so much for your reply.. I can't even say it's a relief to be able to speak to all of you, because it more feels like a door that has been opened, such as when Erin was diagnosed. The unreal thing to me is why i waited so long to find a avenue for my questions, fears, and support I have to give. I do beleive that everything happens for a reason, so I am here and so is Erin for a reason. I just want to thank you all for posting and lending your advice and experiences of your family. I am so thankful to have access to you all. Have a great Night and God Bless. p.s. One of the most thankful things I'm greatful for is Erin's heart, when I had a discussion with her this evening, I told her if she wanted to come on here and join the kids's section that I would support her 100%, however she needed to know * and we've always told her* that her level of CF compared to some others is different, just as we all are different, when she heard this she starting crying and my fears started coming true, I had scared her, *I felt as though i'd failed* But when I asked her why she was crying *which part hit her the hardest* she said it was because it wasn't fair that all these children and people have to deal with this disease. I told her she could do a fundraiser at her school or we could do it through our church, *advice i've recieved on here*, which brings me back to the point of finding this outlet/support family for a reason at this time. Thanks to all of you and I apologise for the lengthiness <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take Care, xNichole & Erin Joan

 

[ViviansMom]

I agree honesty is best thing, Vivian is 10 and she already knows, she lost her only sister 2 years ago to CF, she was 21. Kids are a lot stronger than adults you'll be surprised at her reaction.

Vivian said well Mom"it could be shorter who knows when they are going to get hit by a bus or fall down and hit thier head just some thing that happens I guess. "

 

[ViviansMom]

I agree honesty is best thing, Vivian is 10 and she already knows, she lost her only sister 2 years ago to CF, she was 21. Kids are a lot stronger than adults you'll be surprised at her reaction.

Vivian said well Mom"it could be shorter who knows when they are going to get hit by a bus or fall down and hit thier head just some thing that happens I guess. "

 

[ViviansMom]

I agree honesty is best thing, Vivian is 10 and she already knows, she lost her only sister 2 years ago to CF, she was 21. Kids are a lot stronger than adults you'll be surprised at her reaction.

Vivian said well Mom"it could be shorter who knows when they are going to get hit by a bus or fall down and hit thier head just some thing that happens I guess. "

 

[Lilith]

I found out about the reality of this disease when I was about nine. I'd heard the average lifespan, as well. My parents were always very honest and upfront with me, and yes, it hurt to hear the truth. But I am grateful for their forthright attitude, because it just enabled me to understand more at an earlier age, and I was able to deal with my emotions much more easily. I agree with everyone else. You'll probably be surprised at how well your daughter handles things if you are just straighforward with her. Good luck!

 

[Lilith]

I found out about the reality of this disease when I was about nine. I'd heard the average lifespan, as well. My parents were always very honest and upfront with me, and yes, it hurt to hear the truth. But I am grateful for their forthright attitude, because it just enabled me to understand more at an earlier age, and I was able to deal with my emotions much more easily. I agree with everyone else. You'll probably be surprised at how well your daughter handles things if you are just straighforward with her. Good luck!

 

[Lilith]

I found out about the reality of this disease when I was about nine. I'd heard the average lifespan, as well. My parents were always very honest and upfront with me, and yes, it hurt to hear the truth. But I am grateful for their forthright attitude, because it just enabled me to understand more at an earlier age, and I was able to deal with my emotions much more easily. I agree with everyone else. You'll probably be surprised at how well your daughter handles things if you are just straighforward with her. Good luck!

 

[boosiegirl12]

Thank you Lisa and all of you, Your advice has been so wonderful and it has truly helped me and my family. Erin is now on this site and posting, she's very excited to be talking to people that live with this disease like she does. Thank you again for any and all your advice!
Nichole x <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[boosiegirl12]

Thank you Lisa and all of you, Your advice has been so wonderful and it has truly helped me and my family. Erin is now on this site and posting, she's very excited to be talking to people that live with this disease like she does. Thank you again for any and all your advice!
Nichole x <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[boosiegirl12]

Thank you Lisa and all of you, Your advice has been so wonderful and it has truly helped me and my family. Erin is now on this site and posting, she's very excited to be talking to people that live with this disease like she does. Thank you again for any and all your advice!
Nichole x <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[boosiegirl12]

See that , she was logged in last and didnt swap me back lol Thank goodness for the laptop, or we'd be rock paper scissoring it for the time! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Nichole Erin's Mom

 

[boosiegirl12]

See that , she was logged in last and didnt swap me back lol Thank goodness for the laptop, or we'd be rock paper scissoring it for the time! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Nichole Erin's Mom

 

[boosiegirl12]

See that , she was logged in last and didnt swap me back lol Thank goodness for the laptop, or we'd be rock paper scissoring it for the time! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Nichole Erin's Mom