Something to get off my chest...

T

TonyaH

Guest
Jane, Thank you for your great words.

I agree that CF should never define a person. I want my son to be known for his uniquely wonderful personality, talents, and intelligence. Not his disease. We do not shelter Andrew. CF is a part of life he will have to deal with...just like homework, college applications, a broken heart,,,

But it is very important to remember that there are millions of dollars being donated to the CFF every year to fund research for new medications that will increase the life expectancy of our children. There are people who go to work every day doing nothing but researching new medications to help us. The least we can do is appreciate the tools and education available to us in handling our children's health. Raising a CF child today is not what it was 10 years ago, and not what it will be 10 years from today. While we are very good about Andrew's meds and therapy, we understand from time to time skipping a treatment to make it to the neighborhood party is in his best interest socially. However, being on this board and asking questions and finding what works best for our family is something I am doing to ensure that we are giving Andrew every chance he has of living a long, fulfilled life. To some I may seem overprotective,,I think I'm being smart. You know, there was a time when strapping your baby into a big plastic seat and locking them into the car with big black belts would have seemed overprotective.

Congratulations for your positivie outlook. I am trying to instill the same in Andrew. I don't believe he is going call me overprotective when he is enjoying his adult years and all they have to offer!
 
T

TonyaH

Guest
Jane, Thank you for your great words.

I agree that CF should never define a person. I want my son to be known for his uniquely wonderful personality, talents, and intelligence. Not his disease. We do not shelter Andrew. CF is a part of life he will have to deal with...just like homework, college applications, a broken heart,,,

But it is very important to remember that there are millions of dollars being donated to the CFF every year to fund research for new medications that will increase the life expectancy of our children. There are people who go to work every day doing nothing but researching new medications to help us. The least we can do is appreciate the tools and education available to us in handling our children's health. Raising a CF child today is not what it was 10 years ago, and not what it will be 10 years from today. While we are very good about Andrew's meds and therapy, we understand from time to time skipping a treatment to make it to the neighborhood party is in his best interest socially. However, being on this board and asking questions and finding what works best for our family is something I am doing to ensure that we are giving Andrew every chance he has of living a long, fulfilled life. To some I may seem overprotective,,I think I'm being smart. You know, there was a time when strapping your baby into a big plastic seat and locking them into the car with big black belts would have seemed overprotective.

Congratulations for your positivie outlook. I am trying to instill the same in Andrew. I don't believe he is going call me overprotective when he is enjoying his adult years and all they have to offer!
 
T

TonyaH

Guest
Jane, Thank you for your great words.

I agree that CF should never define a person. I want my son to be known for his uniquely wonderful personality, talents, and intelligence. Not his disease. We do not shelter Andrew. CF is a part of life he will have to deal with...just like homework, college applications, a broken heart,,,

But it is very important to remember that there are millions of dollars being donated to the CFF every year to fund research for new medications that will increase the life expectancy of our children. There are people who go to work every day doing nothing but researching new medications to help us. The least we can do is appreciate the tools and education available to us in handling our children's health. Raising a CF child today is not what it was 10 years ago, and not what it will be 10 years from today. While we are very good about Andrew's meds and therapy, we understand from time to time skipping a treatment to make it to the neighborhood party is in his best interest socially. However, being on this board and asking questions and finding what works best for our family is something I am doing to ensure that we are giving Andrew every chance he has of living a long, fulfilled life. To some I may seem overprotective,,I think I'm being smart. You know, there was a time when strapping your baby into a big plastic seat and locking them into the car with big black belts would have seemed overprotective.

Congratulations for your positivie outlook. I am trying to instill the same in Andrew. I don't believe he is going call me overprotective when he is enjoying his adult years and all they have to offer!
 
T

TonyaH

Guest
Jane, Thank you for your great words.

I agree that CF should never define a person. I want my son to be known for his uniquely wonderful personality, talents, and intelligence. Not his disease. We do not shelter Andrew. CF is a part of life he will have to deal with...just like homework, college applications, a broken heart,,,

But it is very important to remember that there are millions of dollars being donated to the CFF every year to fund research for new medications that will increase the life expectancy of our children. There are people who go to work every day doing nothing but researching new medications to help us. The least we can do is appreciate the tools and education available to us in handling our children's health. Raising a CF child today is not what it was 10 years ago, and not what it will be 10 years from today. While we are very good about Andrew's meds and therapy, we understand from time to time skipping a treatment to make it to the neighborhood party is in his best interest socially. However, being on this board and asking questions and finding what works best for our family is something I am doing to ensure that we are giving Andrew every chance he has of living a long, fulfilled life. To some I may seem overprotective,,I think I'm being smart. You know, there was a time when strapping your baby into a big plastic seat and locking them into the car with big black belts would have seemed overprotective.

Congratulations for your positivie outlook. I am trying to instill the same in Andrew. I don't believe he is going call me overprotective when he is enjoying his adult years and all they have to offer!
 
T

TonyaH

Guest
Jane, Thank you for your great words.

I agree that CF should never define a person. I want my son to be known for his uniquely wonderful personality, talents, and intelligence. Not his disease. We do not shelter Andrew. CF is a part of life he will have to deal with...just like homework, college applications, a broken heart,,,

But it is very important to remember that there are millions of dollars being donated to the CFF every year to fund research for new medications that will increase the life expectancy of our children. There are people who go to work every day doing nothing but researching new medications to help us. The least we can do is appreciate the tools and education available to us in handling our children's health. Raising a CF child today is not what it was 10 years ago, and not what it will be 10 years from today. While we are very good about Andrew's meds and therapy, we understand from time to time skipping a treatment to make it to the neighborhood party is in his best interest socially. However, being on this board and asking questions and finding what works best for our family is something I am doing to ensure that we are giving Andrew every chance he has of living a long, fulfilled life. To some I may seem overprotective,,I think I'm being smart. You know, there was a time when strapping your baby into a big plastic seat and locking them into the car with big black belts would have seemed overprotective.

Congratulations for your positivie outlook. I am trying to instill the same in Andrew. I don't believe he is going call me overprotective when he is enjoying his adult years and all they have to offer!
 
L

lmattaway

New member
Moses, well said. I always emphasize with new CF parents (and even older ones) that the more they instill in their child a responsibility for their own care, the better off that child will do as he or she grows up. So many CF patients get to college age and let their health decline b/c they never truly learned to care for themselves, remember their treatments, do meds on their own, and monitor their lung function. Late elementary, early middle school, CF kids should learn to know what "numbers" to look for at their check ups (weight, pfts, bmi, etc) and should know how to pick up on symptoms of getting sick. Building that solid foundation one block at a time while they're young, will better prepare them for the future, one that does not involve mom handing them their enzymes every time they eat.
 
L

lmattaway

New member
Moses, well said. I always emphasize with new CF parents (and even older ones) that the more they instill in their child a responsibility for their own care, the better off that child will do as he or she grows up. So many CF patients get to college age and let their health decline b/c they never truly learned to care for themselves, remember their treatments, do meds on their own, and monitor their lung function. Late elementary, early middle school, CF kids should learn to know what "numbers" to look for at their check ups (weight, pfts, bmi, etc) and should know how to pick up on symptoms of getting sick. Building that solid foundation one block at a time while they're young, will better prepare them for the future, one that does not involve mom handing them their enzymes every time they eat.
 
L

lmattaway

New member
Moses, well said. I always emphasize with new CF parents (and even older ones) that the more they instill in their child a responsibility for their own care, the better off that child will do as he or she grows up. So many CF patients get to college age and let their health decline b/c they never truly learned to care for themselves, remember their treatments, do meds on their own, and monitor their lung function. Late elementary, early middle school, CF kids should learn to know what "numbers" to look for at their check ups (weight, pfts, bmi, etc) and should know how to pick up on symptoms of getting sick. Building that solid foundation one block at a time while they're young, will better prepare them for the future, one that does not involve mom handing them their enzymes every time they eat.
 
L

lmattaway

New member
Moses, well said. I always emphasize with new CF parents (and even older ones) that the more they instill in their child a responsibility for their own care, the better off that child will do as he or she grows up. So many CF patients get to college age and let their health decline b/c they never truly learned to care for themselves, remember their treatments, do meds on their own, and monitor their lung function. Late elementary, early middle school, CF kids should learn to know what "numbers" to look for at their check ups (weight, pfts, bmi, etc) and should know how to pick up on symptoms of getting sick. Building that solid foundation one block at a time while they're young, will better prepare them for the future, one that does not involve mom handing them their enzymes every time they eat.
 
L

lmattaway

New member
Moses, well said. I always emphasize with new CF parents (and even older ones) that the more they instill in their child a responsibility for their own care, the better off that child will do as he or she grows up. So many CF patients get to college age and let their health decline b/c they never truly learned to care for themselves, remember their treatments, do meds on their own, and monitor their lung function. Late elementary, early middle school, CF kids should learn to know what "numbers" to look for at their check ups (weight, pfts, bmi, etc) and should know how to pick up on symptoms of getting sick. Building that solid foundation one block at a time while they're young, will better prepare them for the future, one that does not involve mom handing them their enzymes every time they eat.
 
M

MYBOY

New member
As a mom of a 10 yr old CFer I agree with everyone. It is nice to hear how people with CF view their lives and childhood etc. Gives us something to think about. Although I am not one of those OVER protective parents - I do try to teach him what not or what to do. I try to teach him to be careful about washing hands, drinking out of water fountains etc. I never joined this board til Tanner turned 9 and it was a real eye opener - I had never even been told about Cepecia. I decided it was time to learn more about CF so that I could be prepared for what will come our way.

I am probably harder on my son when it comes to exercise and compliance doing his treatments. If he whines about his vest and wants a break from it - I tell him only if he goes out and runs. We sometimes go run the track and stairs as a family. And thank God he is not a spoiled brat - I can't stand that! Everyone always says what a nice kid he is!! My husband is probably more protective of him and I have to remind him to let him be a BOY! My goal is to make sure he knows how important exercise, treatments and meds are to keep him healthy! You want to make sure they stick with it when out on their own. He understands that alot of people have it worse then him!
 
M

MYBOY

New member
As a mom of a 10 yr old CFer I agree with everyone. It is nice to hear how people with CF view their lives and childhood etc. Gives us something to think about. Although I am not one of those OVER protective parents - I do try to teach him what not or what to do. I try to teach him to be careful about washing hands, drinking out of water fountains etc. I never joined this board til Tanner turned 9 and it was a real eye opener - I had never even been told about Cepecia. I decided it was time to learn more about CF so that I could be prepared for what will come our way.

I am probably harder on my son when it comes to exercise and compliance doing his treatments. If he whines about his vest and wants a break from it - I tell him only if he goes out and runs. We sometimes go run the track and stairs as a family. And thank God he is not a spoiled brat - I can't stand that! Everyone always says what a nice kid he is!! My husband is probably more protective of him and I have to remind him to let him be a BOY! My goal is to make sure he knows how important exercise, treatments and meds are to keep him healthy! You want to make sure they stick with it when out on their own. He understands that alot of people have it worse then him!
 
M

MYBOY

New member
As a mom of a 10 yr old CFer I agree with everyone. It is nice to hear how people with CF view their lives and childhood etc. Gives us something to think about. Although I am not one of those OVER protective parents - I do try to teach him what not or what to do. I try to teach him to be careful about washing hands, drinking out of water fountains etc. I never joined this board til Tanner turned 9 and it was a real eye opener - I had never even been told about Cepecia. I decided it was time to learn more about CF so that I could be prepared for what will come our way.

I am probably harder on my son when it comes to exercise and compliance doing his treatments. If he whines about his vest and wants a break from it - I tell him only if he goes out and runs. We sometimes go run the track and stairs as a family. And thank God he is not a spoiled brat - I can't stand that! Everyone always says what a nice kid he is!! My husband is probably more protective of him and I have to remind him to let him be a BOY! My goal is to make sure he knows how important exercise, treatments and meds are to keep him healthy! You want to make sure they stick with it when out on their own. He understands that alot of people have it worse then him!
 
M

MYBOY

New member
As a mom of a 10 yr old CFer I agree with everyone. It is nice to hear how people with CF view their lives and childhood etc. Gives us something to think about. Although I am not one of those OVER protective parents - I do try to teach him what not or what to do. I try to teach him to be careful about washing hands, drinking out of water fountains etc. I never joined this board til Tanner turned 9 and it was a real eye opener - I had never even been told about Cepecia. I decided it was time to learn more about CF so that I could be prepared for what will come our way.

I am probably harder on my son when it comes to exercise and compliance doing his treatments. If he whines about his vest and wants a break from it - I tell him only if he goes out and runs. We sometimes go run the track and stairs as a family. And thank God he is not a spoiled brat - I can't stand that! Everyone always says what a nice kid he is!! My husband is probably more protective of him and I have to remind him to let him be a BOY! My goal is to make sure he knows how important exercise, treatments and meds are to keep him healthy! You want to make sure they stick with it when out on their own. He understands that alot of people have it worse then him!
 
M

MYBOY

New member
As a mom of a 10 yr old CFer I agree with everyone. It is nice to hear how people with CF view their lives and childhood etc. Gives us something to think about. Although I am not one of those OVER protective parents - I do try to teach him what not or what to do. I try to teach him to be careful about washing hands, drinking out of water fountains etc. I never joined this board til Tanner turned 9 and it was a real eye opener - I had never even been told about Cepecia. I decided it was time to learn more about CF so that I could be prepared for what will come our way.

I am probably harder on my son when it comes to exercise and compliance doing his treatments. If he whines about his vest and wants a break from it - I tell him only if he goes out and runs. We sometimes go run the track and stairs as a family. And thank God he is not a spoiled brat - I can't stand that! Everyone always says what a nice kid he is!! My husband is probably more protective of him and I have to remind him to let him be a BOY! My goal is to make sure he knows how important exercise, treatments and meds are to keep him healthy! You want to make sure they stick with it when out on their own. He understands that alot of people have it worse then him!
 
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