When (and how) you tell to your kids they have CF?

[static]

<div class="FTQUOTE"><begin quote><i>I'm "better than all other cfers"</end quote>

Yea that was my attitude when I was younger and was pretty much how I was raised as well (the whole working hard thing, expecially stressed during my teenage years). The thing was though, when I was younger we didn't really have to do that much. In fact, there wasn't much more we could do. I remember being on the Tobi trial and dreading it when I was like 13 or something but besides that it was pulmozyme and exersize. From your signature you are about 10 years old than me so there was probably even less for you.

By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).

 

[static]

<div class="FTQUOTE"><begin quote><i>I'm "better than all other cfers"</end quote>
<br />
<br />Yea that was my attitude when I was younger and was pretty much how I was raised as well (the whole working hard thing, expecially stressed during my teenage years). The thing was though, when I was younger we didn't really have to do that much. In fact, there wasn't much more we could do. I remember being on the Tobi trial and dreading it when I was like 13 or something but besides that it was pulmozyme and exersize. From your signature you are about 10 years old than me so there was probably even less for you.
<br />
<br />By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).

 

[Ratatosk]

Ummm, we go on vacations; however, both DH and I have to take a vacation to get away from our jobs. Otherwise they find us. If we're not home, then we can't get called back in to work. <img src="i/expressions/face-icon-small-smile.gif" border="0">

We took DS to visit family in Colorado twice, took him to a wedding in Mexico and we've been to Orlando twice as well.

As for doing better than others -- As a parent we're all too aware as to how quickly things can change and always waiting for the other shoe to drop.

 

[Ratatosk]

Ummm, we go on vacations; however, both DH and I have to take a vacation to get away from our jobs. Otherwise they find us. If we're not home, then we can't get called back in to work. <img src="i/expressions/face-icon-small-smile.gif" border="0">

We took DS to visit family in Colorado twice, took him to a wedding in Mexico and we've been to Orlando twice as well.

As for doing better than others -- As a parent we're all too aware as to how quickly things can change and always waiting for the other shoe to drop.

 

[Ratatosk]

Ummm, we go on vacations; however, both DH and I have to take a vacation to get away from our jobs. Otherwise they find us. If we're not home, then we can't get called back in to work. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />We took DS to visit family in Colorado twice, took him to a wedding in Mexico and we've been to Orlando twice as well.
<br />
<br />As for doing better than others -- As a parent we're all too aware as to how quickly things can change and always waiting for the other shoe to drop.

 

[hmw]

<div class="FTQUOTE"><begin quote>As for doing better than others -- As a parent we're all too aware as to how quickly things can change and always waiting for the other shoe to drop.</end quote></div>
I agree. I also want Emily to grow up being the best SHE can be (a personal challenge to better her health as much as possible), not to grow up with the attitude of being better than others with cf. That's not an attitude I want my kids to have about anything else, so I wouldn't encourage it with this either.

 

[hmw]

<div class="FTQUOTE"><begin quote>As for doing better than others -- As a parent we're all too aware as to how quickly things can change and always waiting for the other shoe to drop.</end quote>
I agree. I also want Emily to grow up being the best SHE can be (a personal challenge to better her health as much as possible), not to grow up with the attitude of being better than others with cf. That's not an attitude I want my kids to have about anything else, so I wouldn't encourage it with this either.

 

[hmw]

<div class="FTQUOTE"><begin quote>As for doing better than others -- As a parent we're all too aware as to how quickly things can change and always waiting for the other shoe to drop.</end quote>
<br />I agree. I also want Emily to grow up being the best SHE can be (a personal challenge to better her health as much as possible), not to grow up with the attitude of being better than others with cf. That's not an attitude I want my kids to have about anything else, so I wouldn't encourage it with this either.
<br />

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>static</b>[/i
By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).</end quote></div>

Thats so funny, it really made me think. Mine did not. Not saying at all that I was deprived, but we just didn't.
However as an adult I definitely have quite an adventurous spirit. My husband and I go on one big vaca every year or other year-(like climbing Mt. Sinai in Egypt, trekking through the Arabian desert in Dubai...fun but quite exotic stuff) For our age I'm aware than we've done some incredible things-more than alot of people do in a lifetime. And I have to partially chalk it up to Cf bc its just ingrained in my personality to experience as much as I can. I have a much deeper appreciation for the big things <b>and</b> the little things than I would without Cf.
I <b>love</b> taking my daughter to Disney, to plays, for spontaneous ice cream, or just walking in our yard with her, but really rolling around and playing. I'm not at all trying to sound better than anyone else, but looking around at other moms-I know that I have a deeper appreciation for those moments in life bc of my circumstances.
And talk about knowing not to sweat the small stuff....When I see what some people consider to be a 'problem'...ha ha.

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>static</b>[/i
By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).</end quote>

Thats so funny, it really made me think. Mine did not. Not saying at all that I was deprived, but we just didn't.
However as an adult I definitely have quite an adventurous spirit. My husband and I go on one big vaca every year or other year-(like climbing Mt. Sinai in Egypt, trekking through the Arabian desert in Dubai...fun but quite exotic stuff) For our age I'm aware than we've done some incredible things-more than alot of people do in a lifetime. And I have to partially chalk it up to Cf bc its just ingrained in my personality to experience as much as I can. I have a much deeper appreciation for the big things <b>and</b> the little things than I would without Cf.
I <b>love</b> taking my daughter to Disney, to plays, for spontaneous ice cream, or just walking in our yard with her, but really rolling around and playing. I'm not at all trying to sound better than anyone else, but looking around at other moms-I know that I have a deeper appreciation for those moments in life bc of my circumstances.
And talk about knowing not to sweat the small stuff....When I see what some people consider to be a 'problem'...ha ha.

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>static</b>[/i
<br />By the way did anybody have parents that went on lots of vacations from like age 1-8. I know mine did, probably because they felt guilty that I wasn't going to live that long (they were told age 5 when I was born).</end quote>
<br />
<br />Thats so funny, it really made me think. Mine did not. Not saying at all that I was deprived, but we just didn't.
<br />However as an adult I definitely have quite an adventurous spirit. My husband and I go on one big vaca every year or other year-(like climbing Mt. Sinai in Egypt, trekking through the Arabian desert in Dubai...fun but quite exotic stuff) For our age I'm aware than we've done some incredible things-more than alot of people do in a lifetime. And I have to partially chalk it up to Cf bc its just ingrained in my personality to experience as much as I can. I have a much deeper appreciation for the big things <b>and</b> the little things than I would without Cf.
<br />I <b>love</b> taking my daughter to Disney, to plays, for spontaneous ice cream, or just walking in our yard with her, but really rolling around and playing. I'm not at all trying to sound better than anyone else, but looking around at other moms-I know that I have a deeper appreciation for those moments in life bc of my circumstances.
<br />And talk about knowing not to sweat the small stuff....When I see what some people consider to be a 'problem'...ha ha.

 

[biz]

the thing about me telling aidan now at 5 is and i knw this may sound crazy but hes not going to remember what i told him. so shuld i tell him everyday. or discuss it everytime we do treatments or i give him enzymes? i just feel he isnt ready to knw he isnt ready to even try to understand what were saying to him and i dont want to confuse him. i just think he needs another year before he can really understand what were talking about. i was thinking after he starts kindergarten would be a good time. cause i think then the questions from kids in school are gona start coming a lot more. im really struggling with this a lot lately.
------------------------------------------
Elizabeth
mama to Aidan 5 w/cf

 

[biz]

the thing about me telling aidan now at 5 is and i knw this may sound crazy but hes not going to remember what i told him. so shuld i tell him everyday. or discuss it everytime we do treatments or i give him enzymes? i just feel he isnt ready to knw he isnt ready to even try to understand what were saying to him and i dont want to confuse him. i just think he needs another year before he can really understand what were talking about. i was thinking after he starts kindergarten would be a good time. cause i think then the questions from kids in school are gona start coming a lot more. im really struggling with this a lot lately.
------------------------------------------
Elizabeth
mama to Aidan 5 w/cf

 

[biz]

the thing about me telling aidan now at 5 is and i knw this may sound crazy but hes not going to remember what i told him. so shuld i tell him everyday. or discuss it everytime we do treatments or i give him enzymes? i just feel he isnt ready to knw he isnt ready to even try to understand what were saying to him and i dont want to confuse him. i just think he needs another year before he can really understand what were talking about. i was thinking after he starts kindergarten would be a good time. cause i think then the questions from kids in school are gona start coming a lot more. im really struggling with this a lot lately.
<br />------------------------------------------
<br />Elizabeth
<br />mama to Aidan 5 w/cf

 

[hmw]

IMO, he will remember. Honestly, it's not something that necessarily needs to be a really big deal or something that is going to require repeated 'lets sit down and talk' discussions as you may be fearing right off... he already know why he does the things he does and has already heard CF mentioned at the dr's office, etc. He just needs a few details filled in. Do you have a social worker at clinic you trust? Maybe she would be able to help, and even be able to talk to you and Aidan together. I think at this point, because you've gone so long withOUT telling him, it's now going to turn into a bigger and bigger deal the longer you go before you DO tell him. He certainly should be told before he goes to school, not after he starts, because you don't want him to go to school unprepared for the questions.

Do you have any of the books about CF written for children? A couple of those may help too. Emily's favorite is Mallory's 65 Roses.

 

[hmw]

IMO, he will remember. Honestly, it's not something that necessarily needs to be a really big deal or something that is going to require repeated 'lets sit down and talk' discussions as you may be fearing right off... he already know why he does the things he does and has already heard CF mentioned at the dr's office, etc. He just needs a few details filled in. Do you have a social worker at clinic you trust? Maybe she would be able to help, and even be able to talk to you and Aidan together. I think at this point, because you've gone so long withOUT telling him, it's now going to turn into a bigger and bigger deal the longer you go before you DO tell him. He certainly should be told before he goes to school, not after he starts, because you don't want him to go to school unprepared for the questions.

Do you have any of the books about CF written for children? A couple of those may help too. Emily's favorite is Mallory's 65 Roses.

 

[hmw]

IMO, he will remember. Honestly, it's not something that necessarily needs to be a really big deal or something that is going to require repeated 'lets sit down and talk' discussions as you may be fearing right off... he already know why he does the things he does and has already heard CF mentioned at the dr's office, etc. He just needs a few details filled in. Do you have a social worker at clinic you trust? Maybe she would be able to help, and even be able to talk to you and Aidan together. I think at this point, because you've gone so long withOUT telling him, it's now going to turn into a bigger and bigger deal the longer you go before you DO tell him. He certainly should be told before he goes to school, not after he starts, because you don't want him to go to school unprepared for the questions.
<br />
<br />Do you have any of the books about CF written for children? A couple of those may help too. Emily's favorite is Mallory's 65 Roses.

 

[Mommafirst]

Elizabeth,

Unless Aidan is developmentally delayed for age 5, he should be able to understand the basics. You shouldn't have to give age inappropriate information at all -- but Alyssa is five. She knows she has CF. Knows how to pronounce Cystic Fibrosis. Knows that she takes pills to help digest her food and does treatments to keep her lungs healthy. She knows that sometimes she goes in the hospital and gets a PICC line to get IV antibiotics.

We have several kid books and CF is just part of life. When we talk about what body parts do in general, we've discussed how CF makes them work differently. It doesn't have to be a dire make or break gotta tell you something moment....but by age 5 it shouldn't be a secret from him either.

 

[Mommafirst]

Elizabeth,

Unless Aidan is developmentally delayed for age 5, he should be able to understand the basics. You shouldn't have to give age inappropriate information at all -- but Alyssa is five. She knows she has CF. Knows how to pronounce Cystic Fibrosis. Knows that she takes pills to help digest her food and does treatments to keep her lungs healthy. She knows that sometimes she goes in the hospital and gets a PICC line to get IV antibiotics.

We have several kid books and CF is just part of life. When we talk about what body parts do in general, we've discussed how CF makes them work differently. It doesn't have to be a dire make or break gotta tell you something moment....but by age 5 it shouldn't be a secret from him either.

 

[Mommafirst]

Elizabeth,
<br />
<br />Unless Aidan is developmentally delayed for age 5, he should be able to understand the basics. You shouldn't have to give age inappropriate information at all -- but Alyssa is five. She knows she has CF. Knows how to pronounce Cystic Fibrosis. Knows that she takes pills to help digest her food and does treatments to keep her lungs healthy. She knows that sometimes she goes in the hospital and gets a PICC line to get IV antibiotics.
<br />
<br />We have several kid books and CF is just part of life. When we talk about what body parts do in general, we've discussed how CF makes them work differently. It doesn't have to be a dire make or break gotta tell you something moment....but by age 5 it shouldn't be a secret from him either.