If you are not involved with CFF fundraising this is a great way to show her how she can make a difference and also exposing her to the "facts" of cf. Also, share with her in the joys of break throughs in cf...including increases in life expectancies. Just realize the 36.8 is a mean not an average... this could be a good math lesson and proves out how some die very young and some very, very old. The best she can do is to take the absolute best care of herself and in particular her lungs so that she'll have them working for her for a very long time. My parents always reminded me if there was a cure it would stop my disease in it's tracks but not fix any damage I'd already done. To this day this (among LOOOOTS of other things) helps motivate me in my 3 hrs. of care.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
How do you tell your 11yr old (going on20) about her disease i the future?
- Thread starter BlessedbymyGirl36
- Start date
BlessedbymyGirl36
New member
Lauren,
thanks so much for your reply, it's so awesome to hear from actual people living with CF. This morning Erin asked me if we could go on this website again. I can't beleive I hadnt done it earlier. There are so many inspiring, intelligent, remarkable people here, with so much to offer. Sorry about the size of Erin's picture by the way, lol I've tried resizing the sucker on photobucket 5 times, it says it's thumbnail size but it's still coming up this big!!
have a great day!
xNichole
thanks so much for your reply, it's so awesome to hear from actual people living with CF. This morning Erin asked me if we could go on this website again. I can't beleive I hadnt done it earlier. There are so many inspiring, intelligent, remarkable people here, with so much to offer. Sorry about the size of Erin's picture by the way, lol I've tried resizing the sucker on photobucket 5 times, it says it's thumbnail size but it's still coming up this big!!
have a great day!
xNichole
BlessedbymyGirl36
New member
Lauren,
thanks so much for your reply, it's so awesome to hear from actual people living with CF. This morning Erin asked me if we could go on this website again. I can't beleive I hadnt done it earlier. There are so many inspiring, intelligent, remarkable people here, with so much to offer. Sorry about the size of Erin's picture by the way, lol I've tried resizing the sucker on photobucket 5 times, it says it's thumbnail size but it's still coming up this big!!
have a great day!
xNichole
thanks so much for your reply, it's so awesome to hear from actual people living with CF. This morning Erin asked me if we could go on this website again. I can't beleive I hadnt done it earlier. There are so many inspiring, intelligent, remarkable people here, with so much to offer. Sorry about the size of Erin's picture by the way, lol I've tried resizing the sucker on photobucket 5 times, it says it's thumbnail size but it's still coming up this big!!
have a great day!
xNichole
BlessedbymyGirl36
New member
Lauren,
thanks so much for your reply, it's so awesome to hear from actual people living with CF. This morning Erin asked me if we could go on this website again. I can't beleive I hadnt done it earlier. There are so many inspiring, intelligent, remarkable people here, with so much to offer. Sorry about the size of Erin's picture by the way, lol I've tried resizing the sucker on photobucket 5 times, it says it's thumbnail size but it's still coming up this big!!
have a great day!
xNichole
thanks so much for your reply, it's so awesome to hear from actual people living with CF. This morning Erin asked me if we could go on this website again. I can't beleive I hadnt done it earlier. There are so many inspiring, intelligent, remarkable people here, with so much to offer. Sorry about the size of Erin's picture by the way, lol I've tried resizing the sucker on photobucket 5 times, it says it's thumbnail size but it's still coming up this big!!
have a great day!
xNichole
BlessedbymyGirl36
New member
YAY I figured it out <img src="i/expressions/face-icon-small-wink.gif" border="0">
BlessedbymyGirl36
New member
YAY I figured it out <img src="i/expressions/face-icon-small-wink.gif" border="0">
BlessedbymyGirl36
New member
YAY I figured it out <img src="i/expressions/face-icon-small-wink.gif" border="0">
Erin's Mom-
I know exactly how you feel. Tanner is 10 and hasn't asked alot about CF. But when he did he started crying and said he was going to die young etc. I told him that he probably would die younger than some people - but just to keep doing treatments and taking care of himself and we really don't know what will happen in the future. I reminded him how some young healthy people die too - and there is no guarantee. I know my son - if we talked about it alot - he would just get depressed and worry all the time. He knows enough for now (I feel anyway), he is just a boy-- and wants to worry about school, sports and girls (little ladies man)! Good luck with everything!
I know exactly how you feel. Tanner is 10 and hasn't asked alot about CF. But when he did he started crying and said he was going to die young etc. I told him that he probably would die younger than some people - but just to keep doing treatments and taking care of himself and we really don't know what will happen in the future. I reminded him how some young healthy people die too - and there is no guarantee. I know my son - if we talked about it alot - he would just get depressed and worry all the time. He knows enough for now (I feel anyway), he is just a boy-- and wants to worry about school, sports and girls (little ladies man)! Good luck with everything!
Erin's Mom-
I know exactly how you feel. Tanner is 10 and hasn't asked alot about CF. But when he did he started crying and said he was going to die young etc. I told him that he probably would die younger than some people - but just to keep doing treatments and taking care of himself and we really don't know what will happen in the future. I reminded him how some young healthy people die too - and there is no guarantee. I know my son - if we talked about it alot - he would just get depressed and worry all the time. He knows enough for now (I feel anyway), he is just a boy-- and wants to worry about school, sports and girls (little ladies man)! Good luck with everything!
I know exactly how you feel. Tanner is 10 and hasn't asked alot about CF. But when he did he started crying and said he was going to die young etc. I told him that he probably would die younger than some people - but just to keep doing treatments and taking care of himself and we really don't know what will happen in the future. I reminded him how some young healthy people die too - and there is no guarantee. I know my son - if we talked about it alot - he would just get depressed and worry all the time. He knows enough for now (I feel anyway), he is just a boy-- and wants to worry about school, sports and girls (little ladies man)! Good luck with everything!
Erin's Mom-
I know exactly how you feel. Tanner is 10 and hasn't asked alot about CF. But when he did he started crying and said he was going to die young etc. I told him that he probably would die younger than some people - but just to keep doing treatments and taking care of himself and we really don't know what will happen in the future. I reminded him how some young healthy people die too - and there is no guarantee. I know my son - if we talked about it alot - he would just get depressed and worry all the time. He knows enough for now (I feel anyway), he is just a boy-- and wants to worry about school, sports and girls (little ladies man)! Good luck with everything!
I know exactly how you feel. Tanner is 10 and hasn't asked alot about CF. But when he did he started crying and said he was going to die young etc. I told him that he probably would die younger than some people - but just to keep doing treatments and taking care of himself and we really don't know what will happen in the future. I reminded him how some young healthy people die too - and there is no guarantee. I know my son - if we talked about it alot - he would just get depressed and worry all the time. He knows enough for now (I feel anyway), he is just a boy-- and wants to worry about school, sports and girls (little ladies man)! Good luck with everything!
BlessedbymyGirl36
New member
I can't say thank you enough for your replies, it is so wonderful to talk to parents who deal with this daily. I am a positive person and all my friends say "I don't know how you do it", or "I've never met anyone stronger", but that is just how I have to be. Anything less and i'd hit the floor and not get up for a long time. My girlfriends do understand what I go through, but to actually hear it from Moms that "go through it" is such a relief, if that makes any sense. CF has made Erin the strong girl she is today, and it's made me a stronger woman and mom, but boy it's nice to let it out once in a while for sure.
Thanks again,
Nichole
Thanks again,
Nichole
BlessedbymyGirl36
New member
I can't say thank you enough for your replies, it is so wonderful to talk to parents who deal with this daily. I am a positive person and all my friends say "I don't know how you do it", or "I've never met anyone stronger", but that is just how I have to be. Anything less and i'd hit the floor and not get up for a long time. My girlfriends do understand what I go through, but to actually hear it from Moms that "go through it" is such a relief, if that makes any sense. CF has made Erin the strong girl she is today, and it's made me a stronger woman and mom, but boy it's nice to let it out once in a while for sure.
Thanks again,
Nichole
Thanks again,
Nichole
BlessedbymyGirl36
New member
I can't say thank you enough for your replies, it is so wonderful to talk to parents who deal with this daily. I am a positive person and all my friends say "I don't know how you do it", or "I've never met anyone stronger", but that is just how I have to be. Anything less and i'd hit the floor and not get up for a long time. My girlfriends do understand what I go through, but to actually hear it from Moms that "go through it" is such a relief, if that makes any sense. CF has made Erin the strong girl she is today, and it's made me a stronger woman and mom, but boy it's nice to let it out once in a while for sure.
Thanks again,
Nichole
Thanks again,
Nichole
T
tammykrumrey
Guest
Nichole,
I sit on our local chapters CFF board, and do help in various fund raising events. Some are within the foundation, and others are some my family does on our own. My girls have heard me talk in front of hundreds of people regarding CF. They hear me state facts. And that does stir up some questions later<img src="i/expressions/face-icon-small-smile.gif" border="0"> They know as much as they can handle at the age they are at.
We really have never sat down and had a talk, it's just when questions pop up, we run with it. I do have a nephew who is older than my girls with a lot more problems than what they have, so that also leads to more opportunities for questions and discussions.
One day my girls and I were discussing hot tubs (because I will not let them get in one...my own personal choice and when they get older, they know that they will have to make those choices on their own). And my little one commented to me that I was a good mom and was teaching them things like staying out of hot tubs, staying away from smoke and doing treatments so that they could live longer. I felt pretty good that she grasped the reasons behind why I tell them to do certain things, at 7 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it is just a discussion that is always ongoing and growing<img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome to the group, and your daughter is a real doll!!
I sit on our local chapters CFF board, and do help in various fund raising events. Some are within the foundation, and others are some my family does on our own. My girls have heard me talk in front of hundreds of people regarding CF. They hear me state facts. And that does stir up some questions later<img src="i/expressions/face-icon-small-smile.gif" border="0"> They know as much as they can handle at the age they are at.
We really have never sat down and had a talk, it's just when questions pop up, we run with it. I do have a nephew who is older than my girls with a lot more problems than what they have, so that also leads to more opportunities for questions and discussions.
One day my girls and I were discussing hot tubs (because I will not let them get in one...my own personal choice and when they get older, they know that they will have to make those choices on their own). And my little one commented to me that I was a good mom and was teaching them things like staying out of hot tubs, staying away from smoke and doing treatments so that they could live longer. I felt pretty good that she grasped the reasons behind why I tell them to do certain things, at 7 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it is just a discussion that is always ongoing and growing<img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome to the group, and your daughter is a real doll!!
T
tammykrumrey
Guest
Nichole,
I sit on our local chapters CFF board, and do help in various fund raising events. Some are within the foundation, and others are some my family does on our own. My girls have heard me talk in front of hundreds of people regarding CF. They hear me state facts. And that does stir up some questions later<img src="i/expressions/face-icon-small-smile.gif" border="0"> They know as much as they can handle at the age they are at.
We really have never sat down and had a talk, it's just when questions pop up, we run with it. I do have a nephew who is older than my girls with a lot more problems than what they have, so that also leads to more opportunities for questions and discussions.
One day my girls and I were discussing hot tubs (because I will not let them get in one...my own personal choice and when they get older, they know that they will have to make those choices on their own). And my little one commented to me that I was a good mom and was teaching them things like staying out of hot tubs, staying away from smoke and doing treatments so that they could live longer. I felt pretty good that she grasped the reasons behind why I tell them to do certain things, at 7 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it is just a discussion that is always ongoing and growing<img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome to the group, and your daughter is a real doll!!
I sit on our local chapters CFF board, and do help in various fund raising events. Some are within the foundation, and others are some my family does on our own. My girls have heard me talk in front of hundreds of people regarding CF. They hear me state facts. And that does stir up some questions later<img src="i/expressions/face-icon-small-smile.gif" border="0"> They know as much as they can handle at the age they are at.
We really have never sat down and had a talk, it's just when questions pop up, we run with it. I do have a nephew who is older than my girls with a lot more problems than what they have, so that also leads to more opportunities for questions and discussions.
One day my girls and I were discussing hot tubs (because I will not let them get in one...my own personal choice and when they get older, they know that they will have to make those choices on their own). And my little one commented to me that I was a good mom and was teaching them things like staying out of hot tubs, staying away from smoke and doing treatments so that they could live longer. I felt pretty good that she grasped the reasons behind why I tell them to do certain things, at 7 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it is just a discussion that is always ongoing and growing<img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome to the group, and your daughter is a real doll!!
T
tammykrumrey
Guest
Nichole,
I sit on our local chapters CFF board, and do help in various fund raising events. Some are within the foundation, and others are some my family does on our own. My girls have heard me talk in front of hundreds of people regarding CF. They hear me state facts. And that does stir up some questions later<img src="i/expressions/face-icon-small-smile.gif" border="0"> They know as much as they can handle at the age they are at.
We really have never sat down and had a talk, it's just when questions pop up, we run with it. I do have a nephew who is older than my girls with a lot more problems than what they have, so that also leads to more opportunities for questions and discussions.
One day my girls and I were discussing hot tubs (because I will not let them get in one...my own personal choice and when they get older, they know that they will have to make those choices on their own). And my little one commented to me that I was a good mom and was teaching them things like staying out of hot tubs, staying away from smoke and doing treatments so that they could live longer. I felt pretty good that she grasped the reasons behind why I tell them to do certain things, at 7 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it is just a discussion that is always ongoing and growing<img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome to the group, and your daughter is a real doll!!
I sit on our local chapters CFF board, and do help in various fund raising events. Some are within the foundation, and others are some my family does on our own. My girls have heard me talk in front of hundreds of people regarding CF. They hear me state facts. And that does stir up some questions later<img src="i/expressions/face-icon-small-smile.gif" border="0"> They know as much as they can handle at the age they are at.
We really have never sat down and had a talk, it's just when questions pop up, we run with it. I do have a nephew who is older than my girls with a lot more problems than what they have, so that also leads to more opportunities for questions and discussions.
One day my girls and I were discussing hot tubs (because I will not let them get in one...my own personal choice and when they get older, they know that they will have to make those choices on their own). And my little one commented to me that I was a good mom and was teaching them things like staying out of hot tubs, staying away from smoke and doing treatments so that they could live longer. I felt pretty good that she grasped the reasons behind why I tell them to do certain things, at 7 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it is just a discussion that is always ongoing and growing<img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome to the group, and your daughter is a real doll!!
BlessedbymyGirl36
New member
Tammy,
Thank you so much for your reply. I see the moms on here that have more than one child with CF, and or relatives as well and I am just so impressed with how much you do and your attitude in doing it. It must be so much harder having two children with CF. I know how you do it, you just do what needs to be done, yet still i'm amazed. thanks again for your advice. Erin has just come through the door from school and asked if i'm on the CF website. Good thing I have a laptop, because I can see a real battle for computer time lol.
Thank you again and God bless you and your family,
Nichole
Thank you so much for your reply. I see the moms on here that have more than one child with CF, and or relatives as well and I am just so impressed with how much you do and your attitude in doing it. It must be so much harder having two children with CF. I know how you do it, you just do what needs to be done, yet still i'm amazed. thanks again for your advice. Erin has just come through the door from school and asked if i'm on the CF website. Good thing I have a laptop, because I can see a real battle for computer time lol.
Thank you again and God bless you and your family,
Nichole
BlessedbymyGirl36
New member
Tammy,
Thank you so much for your reply. I see the moms on here that have more than one child with CF, and or relatives as well and I am just so impressed with how much you do and your attitude in doing it. It must be so much harder having two children with CF. I know how you do it, you just do what needs to be done, yet still i'm amazed. thanks again for your advice. Erin has just come through the door from school and asked if i'm on the CF website. Good thing I have a laptop, because I can see a real battle for computer time lol.
Thank you again and God bless you and your family,
Nichole
Thank you so much for your reply. I see the moms on here that have more than one child with CF, and or relatives as well and I am just so impressed with how much you do and your attitude in doing it. It must be so much harder having two children with CF. I know how you do it, you just do what needs to be done, yet still i'm amazed. thanks again for your advice. Erin has just come through the door from school and asked if i'm on the CF website. Good thing I have a laptop, because I can see a real battle for computer time lol.
Thank you again and God bless you and your family,
Nichole
BlessedbymyGirl36
New member
Tammy,
Thank you so much for your reply. I see the moms on here that have more than one child with CF, and or relatives as well and I am just so impressed with how much you do and your attitude in doing it. It must be so much harder having two children with CF. I know how you do it, you just do what needs to be done, yet still i'm amazed. thanks again for your advice. Erin has just come through the door from school and asked if i'm on the CF website. Good thing I have a laptop, because I can see a real battle for computer time lol.
Thank you again and God bless you and your family,
Nichole
Thank you so much for your reply. I see the moms on here that have more than one child with CF, and or relatives as well and I am just so impressed with how much you do and your attitude in doing it. It must be so much harder having two children with CF. I know how you do it, you just do what needs to be done, yet still i'm amazed. thanks again for your advice. Erin has just come through the door from school and asked if i'm on the CF website. Good thing I have a laptop, because I can see a real battle for computer time lol.
Thank you again and God bless you and your family,
Nichole
mom2lillian
New member
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'.
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'.