Something to get off my chest...

S

Seana30

New member
Although I live with a child who has CF I would NEVER assume I know what people with CF go through everyday. I don't know what Courtney goes through each day emotionally, physically, etc.

Just as you don't understand what we go through as parents of CFers!

Instead of putting us down and telling us we are turning our children into brats, why don't you tell us what your parents did to make life easier for you. Tell us how your parents got you to be compliant with your meds instead of just telling us they should be doing it on their own by age 8. What did they do to make you understand how important it is. If you want to help us give us information to help our children!

I come here for support and information. There has been times when CFers have answered my posts and told me I am doing something wrong with Courtney. I appreciate this because they are not just putting me down. They tell me what I am doing wrong and how to fix it.

I really do not understand the purpose of this post.

Seana
 
S

Seana30

New member
Although I live with a child who has CF I would NEVER assume I know what people with CF go through everyday. I don't know what Courtney goes through each day emotionally, physically, etc.

Just as you don't understand what we go through as parents of CFers!

Instead of putting us down and telling us we are turning our children into brats, why don't you tell us what your parents did to make life easier for you. Tell us how your parents got you to be compliant with your meds instead of just telling us they should be doing it on their own by age 8. What did they do to make you understand how important it is. If you want to help us give us information to help our children!

I come here for support and information. There has been times when CFers have answered my posts and told me I am doing something wrong with Courtney. I appreciate this because they are not just putting me down. They tell me what I am doing wrong and how to fix it.

I really do not understand the purpose of this post.

Seana
 
S

Seana30

New member
Although I live with a child who has CF I would NEVER assume I know what people with CF go through everyday. I don't know what Courtney goes through each day emotionally, physically, etc.

Just as you don't understand what we go through as parents of CFers!

Instead of putting us down and telling us we are turning our children into brats, why don't you tell us what your parents did to make life easier for you. Tell us how your parents got you to be compliant with your meds instead of just telling us they should be doing it on their own by age 8. What did they do to make you understand how important it is. If you want to help us give us information to help our children!

I come here for support and information. There has been times when CFers have answered my posts and told me I am doing something wrong with Courtney. I appreciate this because they are not just putting me down. They tell me what I am doing wrong and how to fix it.

I really do not understand the purpose of this post.

Seana
 
S

Seana30

New member
Although I live with a child who has CF I would NEVER assume I know what people with CF go through everyday. I don't know what Courtney goes through each day emotionally, physically, etc.

Just as you don't understand what we go through as parents of CFers!

Instead of putting us down and telling us we are turning our children into brats, why don't you tell us what your parents did to make life easier for you. Tell us how your parents got you to be compliant with your meds instead of just telling us they should be doing it on their own by age 8. What did they do to make you understand how important it is. If you want to help us give us information to help our children!

I come here for support and information. There has been times when CFers have answered my posts and told me I am doing something wrong with Courtney. I appreciate this because they are not just putting me down. They tell me what I am doing wrong and how to fix it.

I really do not understand the purpose of this post.

Seana
 
S

Seana30

New member
Although I live with a child who has CF I would NEVER assume I know what people with CF go through everyday. I don't know what Courtney goes through each day emotionally, physically, etc.

Just as you don't understand what we go through as parents of CFers!

Instead of putting us down and telling us we are turning our children into brats, why don't you tell us what your parents did to make life easier for you. Tell us how your parents got you to be compliant with your meds instead of just telling us they should be doing it on their own by age 8. What did they do to make you understand how important it is. If you want to help us give us information to help our children!

I come here for support and information. There has been times when CFers have answered my posts and told me I am doing something wrong with Courtney. I appreciate this because they are not just putting me down. They tell me what I am doing wrong and how to fix it.

I really do not understand the purpose of this post.

Seana
 
T

tammykrumrey

Guest
As a mom of two children with CF, it is sometimes hard to not want to over protect them. BUT, I feel that I do a decent job at letting them be kids. There are only two things that they know are things that I will not allow them do with because of CF.

Both are suggested by their CF doctor...one, no hotubs. They are too young to be in them anyways, and since I do not own one myself to monitor it, they cannot get in them. They understand this and know that when they become young adults, it will be a choice they will have to make, but as of now, it is my rule. Two, they must stay clear away from their cousin who also has CF, because he has B. Cepacia. There is no if's or but's about it. It's been 7 years and they stay away from one another and even notice if one touches something, such as a remote control, that the other will not touch it.

Oh, I forgot, no smoky rooms. I personally am allegic to it myself, and cannot stand it. CF or not, I would still be requiring that. Otherwise, they do everything. Play anywhere they want. Swim where they want, with a lifejacket on of course.

Even though I still remind them about meds and treatments, they do them on their own. They may not do them without me reminding them though, but they know it has to be done. They weigh themselves all the time to see how they are doing. Like daily...they are a little extreme with that. And I make them responsible for speaking to their doctor during clinic appts. When questions are asked, they know they need to help with answers. I am not at school with them all day, so I don't know how many poops they have during the day, etc.

Something happened last week with my older daughter that really made me realize that I have done a good job at not treating them any different. Kayla had a yearly appt with her pediatrician, and I told her doctor that Kayla had a problem getting angry easily. That she sometimes just explodes, and it takes a while for her to calm down. The pedia. immediately suggested it was because she was realizing that she was different and went on to talk to Kayla about how she is different b/c she has diabetes. But that no one can see that on the outside. I didn't go into with the pedia., but I didn't truely think that was the problem. She said Kayla needed a support group and to seek counseling. Kayla was furious when we left there.

The next day we were driving, and Kayla had her MP3 player going and headphones on, and she out of the blue says, 'Mom, you guys were wrong yesterday'. I didn't even know what she was talking about. So I asked what she meant. She said 'It doesn't bother me that I have CF. It doesn't make me different. I am like everyone else, I just have CF too.' Too which I happily agreed that I knew she was and that her angry outburst was simply that she couldn't control her temper and had NOTHING to do with having CF, to which she agreed was correct.

I was really proud to see that we had succeeded in not letting my daughters think that they are special/different because of CF. They are just special because they are my kids<img src="">
 
T

tammykrumrey

Guest
As a mom of two children with CF, it is sometimes hard to not want to over protect them. BUT, I feel that I do a decent job at letting them be kids. There are only two things that they know are things that I will not allow them do with because of CF.

Both are suggested by their CF doctor...one, no hotubs. They are too young to be in them anyways, and since I do not own one myself to monitor it, they cannot get in them. They understand this and know that when they become young adults, it will be a choice they will have to make, but as of now, it is my rule. Two, they must stay clear away from their cousin who also has CF, because he has B. Cepacia. There is no if's or but's about it. It's been 7 years and they stay away from one another and even notice if one touches something, such as a remote control, that the other will not touch it.

Oh, I forgot, no smoky rooms. I personally am allegic to it myself, and cannot stand it. CF or not, I would still be requiring that. Otherwise, they do everything. Play anywhere they want. Swim where they want, with a lifejacket on of course.

Even though I still remind them about meds and treatments, they do them on their own. They may not do them without me reminding them though, but they know it has to be done. They weigh themselves all the time to see how they are doing. Like daily...they are a little extreme with that. And I make them responsible for speaking to their doctor during clinic appts. When questions are asked, they know they need to help with answers. I am not at school with them all day, so I don't know how many poops they have during the day, etc.

Something happened last week with my older daughter that really made me realize that I have done a good job at not treating them any different. Kayla had a yearly appt with her pediatrician, and I told her doctor that Kayla had a problem getting angry easily. That she sometimes just explodes, and it takes a while for her to calm down. The pedia. immediately suggested it was because she was realizing that she was different and went on to talk to Kayla about how she is different b/c she has diabetes. But that no one can see that on the outside. I didn't go into with the pedia., but I didn't truely think that was the problem. She said Kayla needed a support group and to seek counseling. Kayla was furious when we left there.

The next day we were driving, and Kayla had her MP3 player going and headphones on, and she out of the blue says, 'Mom, you guys were wrong yesterday'. I didn't even know what she was talking about. So I asked what she meant. She said 'It doesn't bother me that I have CF. It doesn't make me different. I am like everyone else, I just have CF too.' Too which I happily agreed that I knew she was and that her angry outburst was simply that she couldn't control her temper and had NOTHING to do with having CF, to which she agreed was correct.

I was really proud to see that we had succeeded in not letting my daughters think that they are special/different because of CF. They are just special because they are my kids<img src="">
 
T

tammykrumrey

Guest
As a mom of two children with CF, it is sometimes hard to not want to over protect them. BUT, I feel that I do a decent job at letting them be kids. There are only two things that they know are things that I will not allow them do with because of CF.

Both are suggested by their CF doctor...one, no hotubs. They are too young to be in them anyways, and since I do not own one myself to monitor it, they cannot get in them. They understand this and know that when they become young adults, it will be a choice they will have to make, but as of now, it is my rule. Two, they must stay clear away from their cousin who also has CF, because he has B. Cepacia. There is no if's or but's about it. It's been 7 years and they stay away from one another and even notice if one touches something, such as a remote control, that the other will not touch it.

Oh, I forgot, no smoky rooms. I personally am allegic to it myself, and cannot stand it. CF or not, I would still be requiring that. Otherwise, they do everything. Play anywhere they want. Swim where they want, with a lifejacket on of course.

Even though I still remind them about meds and treatments, they do them on their own. They may not do them without me reminding them though, but they know it has to be done. They weigh themselves all the time to see how they are doing. Like daily...they are a little extreme with that. And I make them responsible for speaking to their doctor during clinic appts. When questions are asked, they know they need to help with answers. I am not at school with them all day, so I don't know how many poops they have during the day, etc.

Something happened last week with my older daughter that really made me realize that I have done a good job at not treating them any different. Kayla had a yearly appt with her pediatrician, and I told her doctor that Kayla had a problem getting angry easily. That she sometimes just explodes, and it takes a while for her to calm down. The pedia. immediately suggested it was because she was realizing that she was different and went on to talk to Kayla about how she is different b/c she has diabetes. But that no one can see that on the outside. I didn't go into with the pedia., but I didn't truely think that was the problem. She said Kayla needed a support group and to seek counseling. Kayla was furious when we left there.

The next day we were driving, and Kayla had her MP3 player going and headphones on, and she out of the blue says, 'Mom, you guys were wrong yesterday'. I didn't even know what she was talking about. So I asked what she meant. She said 'It doesn't bother me that I have CF. It doesn't make me different. I am like everyone else, I just have CF too.' Too which I happily agreed that I knew she was and that her angry outburst was simply that she couldn't control her temper and had NOTHING to do with having CF, to which she agreed was correct.

I was really proud to see that we had succeeded in not letting my daughters think that they are special/different because of CF. They are just special because they are my kids<img src="">
 
T

tammykrumrey

Guest
As a mom of two children with CF, it is sometimes hard to not want to over protect them. BUT, I feel that I do a decent job at letting them be kids. There are only two things that they know are things that I will not allow them do with because of CF.

Both are suggested by their CF doctor...one, no hotubs. They are too young to be in them anyways, and since I do not own one myself to monitor it, they cannot get in them. They understand this and know that when they become young adults, it will be a choice they will have to make, but as of now, it is my rule. Two, they must stay clear away from their cousin who also has CF, because he has B. Cepacia. There is no if's or but's about it. It's been 7 years and they stay away from one another and even notice if one touches something, such as a remote control, that the other will not touch it.

Oh, I forgot, no smoky rooms. I personally am allegic to it myself, and cannot stand it. CF or not, I would still be requiring that. Otherwise, they do everything. Play anywhere they want. Swim where they want, with a lifejacket on of course.

Even though I still remind them about meds and treatments, they do them on their own. They may not do them without me reminding them though, but they know it has to be done. They weigh themselves all the time to see how they are doing. Like daily...they are a little extreme with that. And I make them responsible for speaking to their doctor during clinic appts. When questions are asked, they know they need to help with answers. I am not at school with them all day, so I don't know how many poops they have during the day, etc.

Something happened last week with my older daughter that really made me realize that I have done a good job at not treating them any different. Kayla had a yearly appt with her pediatrician, and I told her doctor that Kayla had a problem getting angry easily. That she sometimes just explodes, and it takes a while for her to calm down. The pedia. immediately suggested it was because she was realizing that she was different and went on to talk to Kayla about how she is different b/c she has diabetes. But that no one can see that on the outside. I didn't go into with the pedia., but I didn't truely think that was the problem. She said Kayla needed a support group and to seek counseling. Kayla was furious when we left there.

The next day we were driving, and Kayla had her MP3 player going and headphones on, and she out of the blue says, 'Mom, you guys were wrong yesterday'. I didn't even know what she was talking about. So I asked what she meant. She said 'It doesn't bother me that I have CF. It doesn't make me different. I am like everyone else, I just have CF too.' Too which I happily agreed that I knew she was and that her angry outburst was simply that she couldn't control her temper and had NOTHING to do with having CF, to which she agreed was correct.

I was really proud to see that we had succeeded in not letting my daughters think that they are special/different because of CF. They are just special because they are my kids<img src="">
 
T

tammykrumrey

Guest
As a mom of two children with CF, it is sometimes hard to not want to over protect them. BUT, I feel that I do a decent job at letting them be kids. There are only two things that they know are things that I will not allow them do with because of CF.

Both are suggested by their CF doctor...one, no hotubs. They are too young to be in them anyways, and since I do not own one myself to monitor it, they cannot get in them. They understand this and know that when they become young adults, it will be a choice they will have to make, but as of now, it is my rule. Two, they must stay clear away from their cousin who also has CF, because he has B. Cepacia. There is no if's or but's about it. It's been 7 years and they stay away from one another and even notice if one touches something, such as a remote control, that the other will not touch it.

Oh, I forgot, no smoky rooms. I personally am allegic to it myself, and cannot stand it. CF or not, I would still be requiring that. Otherwise, they do everything. Play anywhere they want. Swim where they want, with a lifejacket on of course.

Even though I still remind them about meds and treatments, they do them on their own. They may not do them without me reminding them though, but they know it has to be done. They weigh themselves all the time to see how they are doing. Like daily...they are a little extreme with that. And I make them responsible for speaking to their doctor during clinic appts. When questions are asked, they know they need to help with answers. I am not at school with them all day, so I don't know how many poops they have during the day, etc.

Something happened last week with my older daughter that really made me realize that I have done a good job at not treating them any different. Kayla had a yearly appt with her pediatrician, and I told her doctor that Kayla had a problem getting angry easily. That she sometimes just explodes, and it takes a while for her to calm down. The pedia. immediately suggested it was because she was realizing that she was different and went on to talk to Kayla about how she is different b/c she has diabetes. But that no one can see that on the outside. I didn't go into with the pedia., but I didn't truely think that was the problem. She said Kayla needed a support group and to seek counseling. Kayla was furious when we left there.

The next day we were driving, and Kayla had her MP3 player going and headphones on, and she out of the blue says, 'Mom, you guys were wrong yesterday'. I didn't even know what she was talking about. So I asked what she meant. She said 'It doesn't bother me that I have CF. It doesn't make me different. I am like everyone else, I just have CF too.' Too which I happily agreed that I knew she was and that her angry outburst was simply that she couldn't control her temper and had NOTHING to do with having CF, to which she agreed was correct.

I was really proud to see that we had succeeded in not letting my daughters think that they are special/different because of CF. They are just special because they are my kids<img src="">
 
M

mousesmom

New member
I am so glad you have raised this and I absolutely agree.

I have always alowed Monique to be with friends and she even has a friend wcf who she spend quite a bit of time with. When I had to go to work and leave her at a creche, other parents with CF kids raised their eybrows. She also does horse riding, against the advice of Drs and other parents(but she loves every minute)

As far as I'm concerned life is about quality and not quantity. We have no right as parents to squash dreams. All kids shoud strive to acheive their dreams, after all we all die some time, no one know how long they will be on earth so why spend life worrying about it.

Just my opinion though...
 
M

mousesmom

New member
I am so glad you have raised this and I absolutely agree.

I have always alowed Monique to be with friends and she even has a friend wcf who she spend quite a bit of time with. When I had to go to work and leave her at a creche, other parents with CF kids raised their eybrows. She also does horse riding, against the advice of Drs and other parents(but she loves every minute)

As far as I'm concerned life is about quality and not quantity. We have no right as parents to squash dreams. All kids shoud strive to acheive their dreams, after all we all die some time, no one know how long they will be on earth so why spend life worrying about it.

Just my opinion though...
 
M

mousesmom

New member
I am so glad you have raised this and I absolutely agree.

I have always alowed Monique to be with friends and she even has a friend wcf who she spend quite a bit of time with. When I had to go to work and leave her at a creche, other parents with CF kids raised their eybrows. She also does horse riding, against the advice of Drs and other parents(but she loves every minute)

As far as I'm concerned life is about quality and not quantity. We have no right as parents to squash dreams. All kids shoud strive to acheive their dreams, after all we all die some time, no one know how long they will be on earth so why spend life worrying about it.

Just my opinion though...
 
M

mousesmom

New member
I am so glad you have raised this and I absolutely agree.

I have always alowed Monique to be with friends and she even has a friend wcf who she spend quite a bit of time with. When I had to go to work and leave her at a creche, other parents with CF kids raised their eybrows. She also does horse riding, against the advice of Drs and other parents(but she loves every minute)

As far as I'm concerned life is about quality and not quantity. We have no right as parents to squash dreams. All kids shoud strive to acheive their dreams, after all we all die some time, no one know how long they will be on earth so why spend life worrying about it.

Just my opinion though...
 
M

mousesmom

New member
I am so glad you have raised this and I absolutely agree.

I have always alowed Monique to be with friends and she even has a friend wcf who she spend quite a bit of time with. When I had to go to work and leave her at a creche, other parents with CF kids raised their eybrows. She also does horse riding, against the advice of Drs and other parents(but she loves every minute)

As far as I'm concerned life is about quality and not quantity. We have no right as parents to squash dreams. All kids shoud strive to acheive their dreams, after all we all die some time, no one know how long they will be on earth so why spend life worrying about it.

Just my opinion though...
 
J

JazzysMom

New member
Overall I do agree with the OP, but as Seana pointed out maybe giving ideas or specifics that helped get you to where you are would be more helpful then just stated how you feel.


It is never easy whether it be in the shoes of a CFer or the parent of one. Everyones environment & upbringing has an influence on how things are done so to paint it that results should be the same across the board isnt that simple.

BTW the idea is great for all kids....not just CFers. I feel many kids now adays are growing up with the "entitlement attitude" and that is a shame......

Sad thing is that I was one of those kids with the entitlement attitude. So I have been there, done that & thankfully learned from it!
 
J

JazzysMom

New member
Overall I do agree with the OP, but as Seana pointed out maybe giving ideas or specifics that helped get you to where you are would be more helpful then just stated how you feel.


It is never easy whether it be in the shoes of a CFer or the parent of one. Everyones environment & upbringing has an influence on how things are done so to paint it that results should be the same across the board isnt that simple.

BTW the idea is great for all kids....not just CFers. I feel many kids now adays are growing up with the "entitlement attitude" and that is a shame......

Sad thing is that I was one of those kids with the entitlement attitude. So I have been there, done that & thankfully learned from it!
 
J

JazzysMom

New member
Overall I do agree with the OP, but as Seana pointed out maybe giving ideas or specifics that helped get you to where you are would be more helpful then just stated how you feel.


It is never easy whether it be in the shoes of a CFer or the parent of one. Everyones environment & upbringing has an influence on how things are done so to paint it that results should be the same across the board isnt that simple.

BTW the idea is great for all kids....not just CFers. I feel many kids now adays are growing up with the "entitlement attitude" and that is a shame......

Sad thing is that I was one of those kids with the entitlement attitude. So I have been there, done that & thankfully learned from it!
 
J

JazzysMom

New member
Overall I do agree with the OP, but as Seana pointed out maybe giving ideas or specifics that helped get you to where you are would be more helpful then just stated how you feel.


It is never easy whether it be in the shoes of a CFer or the parent of one. Everyones environment & upbringing has an influence on how things are done so to paint it that results should be the same across the board isnt that simple.

BTW the idea is great for all kids....not just CFers. I feel many kids now adays are growing up with the "entitlement attitude" and that is a shame......

Sad thing is that I was one of those kids with the entitlement attitude. So I have been there, done that & thankfully learned from it!
 
J

JazzysMom

New member
Overall I do agree with the OP, but as Seana pointed out maybe giving ideas or specifics that helped get you to where you are would be more helpful then just stated how you feel.


It is never easy whether it be in the shoes of a CFer or the parent of one. Everyones environment & upbringing has an influence on how things are done so to paint it that results should be the same across the board isnt that simple.

BTW the idea is great for all kids....not just CFers. I feel many kids now adays are growing up with the "entitlement attitude" and that is a shame......

Sad thing is that I was one of those kids with the entitlement attitude. So I have been there, done that & thankfully learned from it!
 
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