What did your parents do right/wrong?

Emily65Roses · Feb 19, 2008

The advice you've gotten is pretty good.

The things I'd add would be:
Don't turn into a germ nut. Chances are, getting a cold isn't going to kill your child. I get two colds a year at least, every year, and always have. Touching toys at school isn't going to make their skin fall off. Don't go around disinfecting everything, because in the end, it's counter-productive. Disinfecting everything when you don't need to (and need is very limited: transplant patients, for instance) just makes the bacteria more resistant... last thing we need. I had sleepovers. I played in the mud. I dug up worms and went fishing. All regular kid stuff. It didn't kill me.

Let your child go to public school. If you want to home school for your own reasons (be they religious or whatever), that's your call. But don't home school just because of the CF (unless it's a real unusual case and the doctors suggest it --- I still don't like it, but if your kid happens to be really sick, it may be necessary... though those cases are rare). I went to public school all my life, and I'm better for it. I got to socialize like a normal kid. Not to mention, getting exposed to all those nasty germs helps build an immune system. Very important.

Don't spoil your kid or let them get away with murder. Many times I've heard stories of CF kids who got away with everything because of the CF, and they turned into rip-roaring brats. Ick.

Be honest. I'm not telling you to sit your kid down and say "hey, you're going to die!" but don't hide information from her. From what I've seen, if you answer questions as they come, that's the best route. Obviously you want to answer in age-appropriate language (and when it comes time, I'm sure you can ask the moms here what words they used to tell their kids), but don't lie or hide anything from them. Don't let her think every other kid takes meds, and don't let her think her life will be 100% normal. She'll be able to live into adulthood and get a job, get married, all that good stuff... but it will be riddled with medical junk, and will never be that of her peers. Kids are more resilient than adults tend to give them credit for. Most of the time when I hear "Oh I just couldn't tell him/her about the awful truths" it's to spare the adult, NOT the child. The kid will obviously be upset when they hear the crappy parts of it, but they tend to bounce back faster than the adults do. And in the end, they need to know. Having all that information at your disposal makes it easier to make appropriate health care decisions when she gets old enough to do that for herself. If you don't have all the information, you can't make an informed decision. Simple as that.

This is just me, and other people will have different experiences here, but my take on telling people about the CF... the more you treat it like something that just is (i.e. it's here, we can't do anything about it), the better. I was raised as a CFF poster child (literally) for about 5 years when I was a kid. I've always been very open about the CF, and not ashamed of it. If you teach your child to understand it's just part of who she is, she's likely not to be ashamed of it either. Mind you teenage years are a different story... but I mean when all is said and done. The people that go to lengths to hide it, or turn it into a family secret, in my experience, have more problems than those who just deal with it and don't care. As for people feeling sorry for her, there will always be people like that. But if she learns to explain it without making it the saddest thing ever (like if you treat it as a part of her, and not this evil shameful thing), that'll be best. People tend to take cues from you. Be truthful... but if you don't treat it like the end of the world, generally the others don't either.

I think that's it for now. The only other thing I'd say is Amy is right, start with routines now. They become very important. Your child will eventually have to take on her treatments herself. I did my own nebs from the time I was about 12 years old. The longer you do for them, the less likely they are to learn to be self-sufficient... and that's very important.

Finally... bookmark this site. Never be afraid to ask anything, even if you feel stupid. We've had every question possible, and we're always willing to give you any information or advice we may have. I still learn stuff all the time, and I've been learning about CF for 24 years now.

Welcome! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily65Roses · Feb 19, 2008

The advice you've gotten is pretty good.

The things I'd add would be:
Don't turn into a germ nut. Chances are, getting a cold isn't going to kill your child. I get two colds a year at least, every year, and always have. Touching toys at school isn't going to make their skin fall off. Don't go around disinfecting everything, because in the end, it's counter-productive. Disinfecting everything when you don't need to (and need is very limited: transplant patients, for instance) just makes the bacteria more resistant... last thing we need. I had sleepovers. I played in the mud. I dug up worms and went fishing. All regular kid stuff. It didn't kill me.

Let your child go to public school. If you want to home school for your own reasons (be they religious or whatever), that's your call. But don't home school just because of the CF (unless it's a real unusual case and the doctors suggest it --- I still don't like it, but if your kid happens to be really sick, it may be necessary... though those cases are rare). I went to public school all my life, and I'm better for it. I got to socialize like a normal kid. Not to mention, getting exposed to all those nasty germs helps build an immune system. Very important.

Don't spoil your kid or let them get away with murder. Many times I've heard stories of CF kids who got away with everything because of the CF, and they turned into rip-roaring brats. Ick.

Be honest. I'm not telling you to sit your kid down and say "hey, you're going to die!" but don't hide information from her. From what I've seen, if you answer questions as they come, that's the best route. Obviously you want to answer in age-appropriate language (and when it comes time, I'm sure you can ask the moms here what words they used to tell their kids), but don't lie or hide anything from them. Don't let her think every other kid takes meds, and don't let her think her life will be 100% normal. She'll be able to live into adulthood and get a job, get married, all that good stuff... but it will be riddled with medical junk, and will never be that of her peers. Kids are more resilient than adults tend to give them credit for. Most of the time when I hear "Oh I just couldn't tell him/her about the awful truths" it's to spare the adult, NOT the child. The kid will obviously be upset when they hear the crappy parts of it, but they tend to bounce back faster than the adults do. And in the end, they need to know. Having all that information at your disposal makes it easier to make appropriate health care decisions when she gets old enough to do that for herself. If you don't have all the information, you can't make an informed decision. Simple as that.

This is just me, and other people will have different experiences here, but my take on telling people about the CF... the more you treat it like something that just is (i.e. it's here, we can't do anything about it), the better. I was raised as a CFF poster child (literally) for about 5 years when I was a kid. I've always been very open about the CF, and not ashamed of it. If you teach your child to understand it's just part of who she is, she's likely not to be ashamed of it either. Mind you teenage years are a different story... but I mean when all is said and done. The people that go to lengths to hide it, or turn it into a family secret, in my experience, have more problems than those who just deal with it and don't care. As for people feeling sorry for her, there will always be people like that. But if she learns to explain it without making it the saddest thing ever (like if you treat it as a part of her, and not this evil shameful thing), that'll be best. People tend to take cues from you. Be truthful... but if you don't treat it like the end of the world, generally the others don't either.

I think that's it for now. The only other thing I'd say is Amy is right, start with routines now. They become very important. Your child will eventually have to take on her treatments herself. I did my own nebs from the time I was about 12 years old. The longer you do for them, the less likely they are to learn to be self-sufficient... and that's very important.

Finally... bookmark this site. Never be afraid to ask anything, even if you feel stupid. We've had every question possible, and we're always willing to give you any information or advice we may have. I still learn stuff all the time, and I've been learning about CF for 24 years now.

Welcome! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily65Roses · Feb 19, 2008

The advice you've gotten is pretty good.

The things I'd add would be:
Don't turn into a germ nut. Chances are, getting a cold isn't going to kill your child. I get two colds a year at least, every year, and always have. Touching toys at school isn't going to make their skin fall off. Don't go around disinfecting everything, because in the end, it's counter-productive. Disinfecting everything when you don't need to (and need is very limited: transplant patients, for instance) just makes the bacteria more resistant... last thing we need. I had sleepovers. I played in the mud. I dug up worms and went fishing. All regular kid stuff. It didn't kill me.

Let your child go to public school. If you want to home school for your own reasons (be they religious or whatever), that's your call. But don't home school just because of the CF (unless it's a real unusual case and the doctors suggest it --- I still don't like it, but if your kid happens to be really sick, it may be necessary... though those cases are rare). I went to public school all my life, and I'm better for it. I got to socialize like a normal kid. Not to mention, getting exposed to all those nasty germs helps build an immune system. Very important.

Don't spoil your kid or let them get away with murder. Many times I've heard stories of CF kids who got away with everything because of the CF, and they turned into rip-roaring brats. Ick.

Be honest. I'm not telling you to sit your kid down and say "hey, you're going to die!" but don't hide information from her. From what I've seen, if you answer questions as they come, that's the best route. Obviously you want to answer in age-appropriate language (and when it comes time, I'm sure you can ask the moms here what words they used to tell their kids), but don't lie or hide anything from them. Don't let her think every other kid takes meds, and don't let her think her life will be 100% normal. She'll be able to live into adulthood and get a job, get married, all that good stuff... but it will be riddled with medical junk, and will never be that of her peers. Kids are more resilient than adults tend to give them credit for. Most of the time when I hear "Oh I just couldn't tell him/her about the awful truths" it's to spare the adult, NOT the child. The kid will obviously be upset when they hear the crappy parts of it, but they tend to bounce back faster than the adults do. And in the end, they need to know. Having all that information at your disposal makes it easier to make appropriate health care decisions when she gets old enough to do that for herself. If you don't have all the information, you can't make an informed decision. Simple as that.

This is just me, and other people will have different experiences here, but my take on telling people about the CF... the more you treat it like something that just is (i.e. it's here, we can't do anything about it), the better. I was raised as a CFF poster child (literally) for about 5 years when I was a kid. I've always been very open about the CF, and not ashamed of it. If you teach your child to understand it's just part of who she is, she's likely not to be ashamed of it either. Mind you teenage years are a different story... but I mean when all is said and done. The people that go to lengths to hide it, or turn it into a family secret, in my experience, have more problems than those who just deal with it and don't care. As for people feeling sorry for her, there will always be people like that. But if she learns to explain it without making it the saddest thing ever (like if you treat it as a part of her, and not this evil shameful thing), that'll be best. People tend to take cues from you. Be truthful... but if you don't treat it like the end of the world, generally the others don't either.

I think that's it for now. The only other thing I'd say is Amy is right, start with routines now. They become very important. Your child will eventually have to take on her treatments herself. I did my own nebs from the time I was about 12 years old. The longer you do for them, the less likely they are to learn to be self-sufficient... and that's very important.

Finally... bookmark this site. Never be afraid to ask anything, even if you feel stupid. We've had every question possible, and we're always willing to give you any information or advice we may have. I still learn stuff all the time, and I've been learning about CF for 24 years now.

Welcome! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily65Roses · Feb 19, 2008

The advice you've gotten is pretty good.

The things I'd add would be:
Don't turn into a germ nut. Chances are, getting a cold isn't going to kill your child. I get two colds a year at least, every year, and always have. Touching toys at school isn't going to make their skin fall off. Don't go around disinfecting everything, because in the end, it's counter-productive. Disinfecting everything when you don't need to (and need is very limited: transplant patients, for instance) just makes the bacteria more resistant... last thing we need. I had sleepovers. I played in the mud. I dug up worms and went fishing. All regular kid stuff. It didn't kill me.

Let your child go to public school. If you want to home school for your own reasons (be they religious or whatever), that's your call. But don't home school just because of the CF (unless it's a real unusual case and the doctors suggest it --- I still don't like it, but if your kid happens to be really sick, it may be necessary... though those cases are rare). I went to public school all my life, and I'm better for it. I got to socialize like a normal kid. Not to mention, getting exposed to all those nasty germs helps build an immune system. Very important.

Don't spoil your kid or let them get away with murder. Many times I've heard stories of CF kids who got away with everything because of the CF, and they turned into rip-roaring brats. Ick.

Be honest. I'm not telling you to sit your kid down and say "hey, you're going to die!" but don't hide information from her. From what I've seen, if you answer questions as they come, that's the best route. Obviously you want to answer in age-appropriate language (and when it comes time, I'm sure you can ask the moms here what words they used to tell their kids), but don't lie or hide anything from them. Don't let her think every other kid takes meds, and don't let her think her life will be 100% normal. She'll be able to live into adulthood and get a job, get married, all that good stuff... but it will be riddled with medical junk, and will never be that of her peers. Kids are more resilient than adults tend to give them credit for. Most of the time when I hear "Oh I just couldn't tell him/her about the awful truths" it's to spare the adult, NOT the child. The kid will obviously be upset when they hear the crappy parts of it, but they tend to bounce back faster than the adults do. And in the end, they need to know. Having all that information at your disposal makes it easier to make appropriate health care decisions when she gets old enough to do that for herself. If you don't have all the information, you can't make an informed decision. Simple as that.

This is just me, and other people will have different experiences here, but my take on telling people about the CF... the more you treat it like something that just is (i.e. it's here, we can't do anything about it), the better. I was raised as a CFF poster child (literally) for about 5 years when I was a kid. I've always been very open about the CF, and not ashamed of it. If you teach your child to understand it's just part of who she is, she's likely not to be ashamed of it either. Mind you teenage years are a different story... but I mean when all is said and done. The people that go to lengths to hide it, or turn it into a family secret, in my experience, have more problems than those who just deal with it and don't care. As for people feeling sorry for her, there will always be people like that. But if she learns to explain it without making it the saddest thing ever (like if you treat it as a part of her, and not this evil shameful thing), that'll be best. People tend to take cues from you. Be truthful... but if you don't treat it like the end of the world, generally the others don't either.

I think that's it for now. The only other thing I'd say is Amy is right, start with routines now. They become very important. Your child will eventually have to take on her treatments herself. I did my own nebs from the time I was about 12 years old. The longer you do for them, the less likely they are to learn to be self-sufficient... and that's very important.

Finally... bookmark this site. Never be afraid to ask anything, even if you feel stupid. We've had every question possible, and we're always willing to give you any information or advice we may have. I still learn stuff all the time, and I've been learning about CF for 24 years now.

Welcome! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily65Roses · Feb 19, 2008

The advice you've gotten is pretty good.

The things I'd add would be:
Don't turn into a germ nut. Chances are, getting a cold isn't going to kill your child. I get two colds a year at least, every year, and always have. Touching toys at school isn't going to make their skin fall off. Don't go around disinfecting everything, because in the end, it's counter-productive. Disinfecting everything when you don't need to (and need is very limited: transplant patients, for instance) just makes the bacteria more resistant... last thing we need. I had sleepovers. I played in the mud. I dug up worms and went fishing. All regular kid stuff. It didn't kill me.

Let your child go to public school. If you want to home school for your own reasons (be they religious or whatever), that's your call. But don't home school just because of the CF (unless it's a real unusual case and the doctors suggest it --- I still don't like it, but if your kid happens to be really sick, it may be necessary... though those cases are rare). I went to public school all my life, and I'm better for it. I got to socialize like a normal kid. Not to mention, getting exposed to all those nasty germs helps build an immune system. Very important.

Don't spoil your kid or let them get away with murder. Many times I've heard stories of CF kids who got away with everything because of the CF, and they turned into rip-roaring brats. Ick.

Be honest. I'm not telling you to sit your kid down and say "hey, you're going to die!" but don't hide information from her. From what I've seen, if you answer questions as they come, that's the best route. Obviously you want to answer in age-appropriate language (and when it comes time, I'm sure you can ask the moms here what words they used to tell their kids), but don't lie or hide anything from them. Don't let her think every other kid takes meds, and don't let her think her life will be 100% normal. She'll be able to live into adulthood and get a job, get married, all that good stuff... but it will be riddled with medical junk, and will never be that of her peers. Kids are more resilient than adults tend to give them credit for. Most of the time when I hear "Oh I just couldn't tell him/her about the awful truths" it's to spare the adult, NOT the child. The kid will obviously be upset when they hear the crappy parts of it, but they tend to bounce back faster than the adults do. And in the end, they need to know. Having all that information at your disposal makes it easier to make appropriate health care decisions when she gets old enough to do that for herself. If you don't have all the information, you can't make an informed decision. Simple as that.

This is just me, and other people will have different experiences here, but my take on telling people about the CF... the more you treat it like something that just is (i.e. it's here, we can't do anything about it), the better. I was raised as a CFF poster child (literally) for about 5 years when I was a kid. I've always been very open about the CF, and not ashamed of it. If you teach your child to understand it's just part of who she is, she's likely not to be ashamed of it either. Mind you teenage years are a different story... but I mean when all is said and done. The people that go to lengths to hide it, or turn it into a family secret, in my experience, have more problems than those who just deal with it and don't care. As for people feeling sorry for her, there will always be people like that. But if she learns to explain it without making it the saddest thing ever (like if you treat it as a part of her, and not this evil shameful thing), that'll be best. People tend to take cues from you. Be truthful... but if you don't treat it like the end of the world, generally the others don't either.

I think that's it for now. The only other thing I'd say is Amy is right, start with routines now. They become very important. Your child will eventually have to take on her treatments herself. I did my own nebs from the time I was about 12 years old. The longer you do for them, the less likely they are to learn to be self-sufficient... and that's very important.

Finally... bookmark this site. Never be afraid to ask anything, even if you feel stupid. We've had every question possible, and we're always willing to give you any information or advice we may have. I still learn stuff all the time, and I've been learning about CF for 24 years now.

Welcome! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jade · Feb 19, 2008