A Sensitive Issue........Part 2

[mcbrash]

Sorry I just wanted to bring this topic forward once again.

To be quite honest, who's to say which way is the best way to tell our children that their lives will be cut short because of CF? I was always a firm believer in my son knowing the truth from a very young age as I knew once he started to get that much older, it would be so much harder to deal with. I never sat him down to tell him, I just bought up the subject every now and then, whenever he rebelled about getting his meds, therapy, etc. He knew that if he didn't do all that he was supposed to, that he could end up getting sick and perhaps have to go into the hospital. We talked about how people die at different ages, whether it be in an accident or being sick, none of us know how long we have on this earth so the best thing to do is to take care of our health as best we can. Matt lost a friend to CF at an early age and I did tell him that no two CF'ers were alike with their illness and unfortunately his person's was much worse and that was even more reason to take good care of himself.
I feel that I did the right thing but that's not to say it is the right way for others to do it. This way made it much easier for me and not such a shock for Matt later on finding out the truth, if I had not told him.........to me that would have been devastating for him.

On the other hand, when going through many of Matt's discs, I found an email that he had sent to me a few years back. He spoke of how he didn't do well in school because he didn't think he would be here long enough so he really didn't care. Later on he really didn't care about other things as he still thought his life would be cut short etc. I am going to try to find this email from him as I would really like to post it on this board for you to read. Again, I felt I did right by letting him know at a very early age, if only I could have made him realize just how much he had achieved in his lifetime.

If I had it to do over again, I still would have handled this the same way as I did before.

Sandy

Mom of Matt
Jan 6/78 - May 15/06

 

[mcbrash]

Sorry I just wanted to bring this topic forward once again.

To be quite honest, who's to say which way is the best way to tell our children that their lives will be cut short because of CF? I was always a firm believer in my son knowing the truth from a very young age as I knew once he started to get that much older, it would be so much harder to deal with. I never sat him down to tell him, I just bought up the subject every now and then, whenever he rebelled about getting his meds, therapy, etc. He knew that if he didn't do all that he was supposed to, that he could end up getting sick and perhaps have to go into the hospital. We talked about how people die at different ages, whether it be in an accident or being sick, none of us know how long we have on this earth so the best thing to do is to take care of our health as best we can. Matt lost a friend to CF at an early age and I did tell him that no two CF'ers were alike with their illness and unfortunately his person's was much worse and that was even more reason to take good care of himself.
I feel that I did the right thing but that's not to say it is the right way for others to do it. This way made it much easier for me and not such a shock for Matt later on finding out the truth, if I had not told him.........to me that would have been devastating for him.

On the other hand, when going through many of Matt's discs, I found an email that he had sent to me a few years back. He spoke of how he didn't do well in school because he didn't think he would be here long enough so he really didn't care. Later on he really didn't care about other things as he still thought his life would be cut short etc. I am going to try to find this email from him as I would really like to post it on this board for you to read. Again, I felt I did right by letting him know at a very early age, if only I could have made him realize just how much he had achieved in his lifetime.

If I had it to do over again, I still would have handled this the same way as I did before.

Sandy

Mom of Matt
Jan 6/78 - May 15/06

 

[mcbrash]

Sorry I just wanted to bring this topic forward once again.

To be quite honest, who's to say which way is the best way to tell our children that their lives will be cut short because of CF? I was always a firm believer in my son knowing the truth from a very young age as I knew once he started to get that much older, it would be so much harder to deal with. I never sat him down to tell him, I just bought up the subject every now and then, whenever he rebelled about getting his meds, therapy, etc. He knew that if he didn't do all that he was supposed to, that he could end up getting sick and perhaps have to go into the hospital. We talked about how people die at different ages, whether it be in an accident or being sick, none of us know how long we have on this earth so the best thing to do is to take care of our health as best we can. Matt lost a friend to CF at an early age and I did tell him that no two CF'ers were alike with their illness and unfortunately his person's was much worse and that was even more reason to take good care of himself.
I feel that I did the right thing but that's not to say it is the right way for others to do it. This way made it much easier for me and not such a shock for Matt later on finding out the truth, if I had not told him.........to me that would have been devastating for him.

On the other hand, when going through many of Matt's discs, I found an email that he had sent to me a few years back. He spoke of how he didn't do well in school because he didn't think he would be here long enough so he really didn't care. Later on he really didn't care about other things as he still thought his life would be cut short etc. I am going to try to find this email from him as I would really like to post it on this board for you to read. Again, I felt I did right by letting him know at a very early age, if only I could have made him realize just how much he had achieved in his lifetime.

If I had it to do over again, I still would have handled this the same way as I did before.

Sandy

Mom of Matt
Jan 6/78 - May 15/06

 

[mcbrash]

To be quite honest, who's to say which way is the best way to tell our children that their lives will be cut short because of CF? I was always a firm believer in my son knowing the truth from a very young age as I knew once he started to get that much older, it would be so much harder to deal with. I never sat him down to tell him, I just bought up the subject every now and then, whenever he rebelled about getting his meds, therapy, etc. He knew that if he didn't do all that he was supposed to, that he could end up getting sick and perhaps have to go into the hospital. We talked about how people die at different ages, whether it be in an accident or being sick, none of us know how long we have on this earth so the best thing to do is to take care of our health as best we can. Matt lost a friend to CF at an early age and I did tell him that no two CF'ers were alike with their illness and unfortunately his person's was much worse and that was even more reason to take good care of himself.
I feel that I did the right thing but that's not to say it is the right way for others to do it. This way made it much easier for me and not such a shock for Matt later on finding out the truth, if I had not told him.........to me that would have been devastating for him.

On the other hand, when going through many of Matt's discs, I found an email that he had sent to me a few years back. He spoke of how he didn't do well in school because he didn't think he would be here long enough so he really didn't care. Later on he really didn't care about other things as he still thought his life would be cut short etc. I am going to try to find this email from him as I would really like to post it on this board for you to read. Again, I felt I did right by letting him know at a very early age, if only I could have made him realize just how much he had achieved in his lifetime.

If I had it to do over again, I still would have handled this the same way as I did before.

Sandy

Mom of Matt
Jan 6/78 - May 15/06

 

[mcbrash]

To be quite honest, who's to say which way is the best way to tell our children that their lives will be cut short because of CF? I was always a firm believer in my son knowing the truth from a very young age as I knew once he started to get that much older, it would be so much harder to deal with. I never sat him down to tell him, I just bought up the subject every now and then, whenever he rebelled about getting his meds, therapy, etc. He knew that if he didn't do all that he was supposed to, that he could end up getting sick and perhaps have to go into the hospital. We talked about how people die at different ages, whether it be in an accident or being sick, none of us know how long we have on this earth so the best thing to do is to take care of our health as best we can. Matt lost a friend to CF at an early age and I did tell him that no two CF'ers were alike with their illness and unfortunately his person's was much worse and that was even more reason to take good care of himself.
I feel that I did the right thing but that's not to say it is the right way for others to do it. This way made it much easier for me and not such a shock for Matt later on finding out the truth, if I had not told him.........to me that would have been devastating for him.

On the other hand, when going through many of Matt's discs, I found an email that he had sent to me a few years back. He spoke of how he didn't do well in school because he didn't think he would be here long enough so he really didn't care. Later on he really didn't care about other things as he still thought his life would be cut short etc. I am going to try to find this email from him as I would really like to post it on this board for you to read. Again, I felt I did right by letting him know at a very early age, if only I could have made him realize just how much he had achieved in his lifetime.

If I had it to do over again, I still would have handled this the same way as I did before.

Sandy

Mom of Matt
Jan 6/78 - May 15/06

 

[mcbrash]

To be quite honest, who's to say which way is the best way to tell our children that their lives will be cut short because of CF? I was always a firm believer in my son knowing the truth from a very young age as I knew once he started to get that much older, it would be so much harder to deal with. I never sat him down to tell him, I just bought up the subject every now and then, whenever he rebelled about getting his meds, therapy, etc. He knew that if he didn't do all that he was supposed to, that he could end up getting sick and perhaps have to go into the hospital. We talked about how people die at different ages, whether it be in an accident or being sick, none of us know how long we have on this earth so the best thing to do is to take care of our health as best we can. Matt lost a friend to CF at an early age and I did tell him that no two CF'ers were alike with their illness and unfortunately his person's was much worse and that was even more reason to take good care of himself.
I feel that I did the right thing but that's not to say it is the right way for others to do it. This way made it much easier for me and not such a shock for Matt later on finding out the truth, if I had not told him.........to me that would have been devastating for him.

On the other hand, when going through many of Matt's discs, I found an email that he had sent to me a few years back. He spoke of how he didn't do well in school because he didn't think he would be here long enough so he really didn't care. Later on he really didn't care about other things as he still thought his life would be cut short etc. I am going to try to find this email from him as I would really like to post it on this board for you to read. Again, I felt I did right by letting him know at a very early age, if only I could have made him realize just how much he had achieved in his lifetime.

If I had it to do over again, I still would have handled this the same way as I did before.

Sandy

Mom of Matt
Jan 6/78 - May 15/06

 

[Jane]

Sandy, I read post in your earlier reply. It would be interesting to read what Matt had to say. My son Josh has had times when he felt hopeless about his future too. Last year he had to write a goals paper for his health class. It contained short range, medium range and long term goals. One day he wrote them all down, the next day he went back and edited it to include things like "what's the point", "I know its not going to happen", "No way, not now".

I was heartbreaking to read.

Each child is different and each parent does only what they know how to do. I'm so glad you said you wouldn't change the way you handled it. Matt was a lucky kid to have such a thoughtful and strong Mom.

 

[Jane]

Sandy, I read post in your earlier reply. It would be interesting to read what Matt had to say. My son Josh has had times when he felt hopeless about his future too. Last year he had to write a goals paper for his health class. It contained short range, medium range and long term goals. One day he wrote them all down, the next day he went back and edited it to include things like "what's the point", "I know its not going to happen", "No way, not now".

I was heartbreaking to read.

Each child is different and each parent does only what they know how to do. I'm so glad you said you wouldn't change the way you handled it. Matt was a lucky kid to have such a thoughtful and strong Mom.

 

[Jane]

Sandy, I read post in your earlier reply. It would be interesting to read what Matt had to say. My son Josh has had times when he felt hopeless about his future too. Last year he had to write a goals paper for his health class. It contained short range, medium range and long term goals. One day he wrote them all down, the next day he went back and edited it to include things like "what's the point", "I know its not going to happen", "No way, not now".

I was heartbreaking to read.

Each child is different and each parent does only what they know how to do. I'm so glad you said you wouldn't change the way you handled it. Matt was a lucky kid to have such a thoughtful and strong Mom.

 

[coltsfan715]

Hello,

I just wanted to say that I felt the same way in high school and still do at times.

It is kind of surreal because with this disease you are reminded of your mortality everyday. Whereas other typical kids/people our age feel invincable and have these limitless abilities to some extent. We are constantly reminded of the gravity of having CF and are constantly trying to beat the nagging thoughts of what CF could do and/or will do to us. It is hard when you are forced to face the future when you aren't sure what kind of future you will have - other "healthy" kids don't really think about that stuff because they aren't reminded of their health everyday and they don't have to do a plethera of meds just to be able to maintain. At most times as a kid - even with CF you don't HAVE to think of the future you are able to think in very immediate terms and it makes it easier to deal with the CF beast. When you HAVE to think about long term stuff though it really does put a big huge damper on everything because it can be very unclear - especially when/if your health is not the best when you are having to do it.

It is hard in any situation - no matter how hard you may try not to think of the numbers you can't help it sometimes it makes you wonder what is the point - maybe not all the time but at least every now and then.

I know not the most positive way to look at it, but it is the truth.

I am not looking to get the just live - don't think about life expectancy speech/lecture. I know all about that. I am just sharing some thoughts I have had with these women - so please no one lecture me lol.

Take Care,
Lindsey

 

[coltsfan715]

Hello,

I just wanted to say that I felt the same way in high school and still do at times.

It is kind of surreal because with this disease you are reminded of your mortality everyday. Whereas other typical kids/people our age feel invincable and have these limitless abilities to some extent. We are constantly reminded of the gravity of having CF and are constantly trying to beat the nagging thoughts of what CF could do and/or will do to us. It is hard when you are forced to face the future when you aren't sure what kind of future you will have - other "healthy" kids don't really think about that stuff because they aren't reminded of their health everyday and they don't have to do a plethera of meds just to be able to maintain. At most times as a kid - even with CF you don't HAVE to think of the future you are able to think in very immediate terms and it makes it easier to deal with the CF beast. When you HAVE to think about long term stuff though it really does put a big huge damper on everything because it can be very unclear - especially when/if your health is not the best when you are having to do it.

It is hard in any situation - no matter how hard you may try not to think of the numbers you can't help it sometimes it makes you wonder what is the point - maybe not all the time but at least every now and then.

I know not the most positive way to look at it, but it is the truth.

I am not looking to get the just live - don't think about life expectancy speech/lecture. I know all about that. I am just sharing some thoughts I have had with these women - so please no one lecture me lol.

Take Care,
Lindsey

 

[coltsfan715]

Hello,

I just wanted to say that I felt the same way in high school and still do at times.

It is kind of surreal because with this disease you are reminded of your mortality everyday. Whereas other typical kids/people our age feel invincable and have these limitless abilities to some extent. We are constantly reminded of the gravity of having CF and are constantly trying to beat the nagging thoughts of what CF could do and/or will do to us. It is hard when you are forced to face the future when you aren't sure what kind of future you will have - other "healthy" kids don't really think about that stuff because they aren't reminded of their health everyday and they don't have to do a plethera of meds just to be able to maintain. At most times as a kid - even with CF you don't HAVE to think of the future you are able to think in very immediate terms and it makes it easier to deal with the CF beast. When you HAVE to think about long term stuff though it really does put a big huge damper on everything because it can be very unclear - especially when/if your health is not the best when you are having to do it.

It is hard in any situation - no matter how hard you may try not to think of the numbers you can't help it sometimes it makes you wonder what is the point - maybe not all the time but at least every now and then.

I know not the most positive way to look at it, but it is the truth.

I am not looking to get the just live - don't think about life expectancy speech/lecture. I know all about that. I am just sharing some thoughts I have had with these women - so please no one lecture me lol.

Take Care,
Lindsey

 

[lightNlife]

I suppose it all depends on what you believe the overall main goal of life is. Is it to be happy? To do your best with whatever you've been given? Is it to make a mark that lasts longer than your own life? Is it to live a life pleasing to God? All of those things have factored into how I learned to accept that I have CF and to live with it as gracefully as possible.

It all comes down to choices. If the choices we make are done with the attitude of "I'll never live long anyway" then that's poor decision making. By the same token, making a choice with the attitude of "I'm invincible and nothing bad is ever going to happen" is poor decision making as well. A wise philosopher once said that "temperance is the mean between two extremes." I don't think it's a wise practice to tell kids that their lives will be cut short because of CF, nor do I think it's wise to let them think that CF is no big deal. The mean between these two extremes is what I think will help a kid (or other person who is newly aware of CF) have a healthy mental attitude about it.

I live for today, knowing full well that the choices I make today will have bearing on the kind of tomorrow I will face.

 

[lightNlife]

I suppose it all depends on what you believe the overall main goal of life is. Is it to be happy? To do your best with whatever you've been given? Is it to make a mark that lasts longer than your own life? Is it to live a life pleasing to God? All of those things have factored into how I learned to accept that I have CF and to live with it as gracefully as possible.

It all comes down to choices. If the choices we make are done with the attitude of "I'll never live long anyway" then that's poor decision making. By the same token, making a choice with the attitude of "I'm invincible and nothing bad is ever going to happen" is poor decision making as well. A wise philosopher once said that "temperance is the mean between two extremes." I don't think it's a wise practice to tell kids that their lives will be cut short because of CF, nor do I think it's wise to let them think that CF is no big deal. The mean between these two extremes is what I think will help a kid (or other person who is newly aware of CF) have a healthy mental attitude about it.

I live for today, knowing full well that the choices I make today will have bearing on the kind of tomorrow I will face.

 

[lightNlife]

I suppose it all depends on what you believe the overall main goal of life is. Is it to be happy? To do your best with whatever you've been given? Is it to make a mark that lasts longer than your own life? Is it to live a life pleasing to God? All of those things have factored into how I learned to accept that I have CF and to live with it as gracefully as possible.

It all comes down to choices. If the choices we make are done with the attitude of "I'll never live long anyway" then that's poor decision making. By the same token, making a choice with the attitude of "I'm invincible and nothing bad is ever going to happen" is poor decision making as well. A wise philosopher once said that "temperance is the mean between two extremes." I don't think it's a wise practice to tell kids that their lives will be cut short because of CF, nor do I think it's wise to let them think that CF is no big deal. The mean between these two extremes is what I think will help a kid (or other person who is newly aware of CF) have a healthy mental attitude about it.

I live for today, knowing full well that the choices I make today will have bearing on the kind of tomorrow I will face.

 

[LisaV]

My husband said he was in a hurry to come into his adult power because he had been told that it would be a miracle if he made it to 35. He did too -- and had accomplished a lot by then. (And I think he figured that if he only had a short time on this earth he wanted to spend as much if it here as an adult in charge of his own life rather than as a child being somewhat controlled by others.)

But he also said that when he was still alive at 36 he was actually kind of angry becasue he had made some decisions on the theory that he wouldn't live too long. (Not sure of all of the things he had second thoughts about but he did divorce his first wife then....)

So later in his 50s he said that he hoped his nieces (who have CF and were colllege-aged at the time) were living as though they would die young (that is living each day as fully as possible and cramming as much as what they wanted to do into that today) but at the same time that they weren't counting on dying young.;-)

 

[LisaV]

My husband said he was in a hurry to come into his adult power because he had been told that it would be a miracle if he made it to 35. He did too -- and had accomplished a lot by then. (And I think he figured that if he only had a short time on this earth he wanted to spend as much if it here as an adult in charge of his own life rather than as a child being somewhat controlled by others.)

But he also said that when he was still alive at 36 he was actually kind of angry becasue he had made some decisions on the theory that he wouldn't live too long. (Not sure of all of the things he had second thoughts about but he did divorce his first wife then....)

So later in his 50s he said that he hoped his nieces (who have CF and were colllege-aged at the time) were living as though they would die young (that is living each day as fully as possible and cramming as much as what they wanted to do into that today) but at the same time that they weren't counting on dying young.;-)

 

[LisaV]

My husband said he was in a hurry to come into his adult power because he had been told that it would be a miracle if he made it to 35. He did too -- and had accomplished a lot by then. (And I think he figured that if he only had a short time on this earth he wanted to spend as much if it here as an adult in charge of his own life rather than as a child being somewhat controlled by others.)

But he also said that when he was still alive at 36 he was actually kind of angry becasue he had made some decisions on the theory that he wouldn't live too long. (Not sure of all of the things he had second thoughts about but he did divorce his first wife then....)

So later in his 50s he said that he hoped his nieces (who have CF and were colllege-aged at the time) were living as though they would die young (that is living each day as fully as possible and cramming as much as what they wanted to do into that today) but at the same time that they weren't counting on dying young.;-)

 

[Debi]

There is only one thing I am sure of, and that is that none of us really knows what the "right" thing to do is. The right thing is different for everyone. For me, even though the sweat tests never diagnosed cf, my parents and doctors knew it was something bad and that my life expectancy was not going to be normal, and they were honest with me from early childhood. I remember wondering in my junior year in high school what the point of doing well was if I was just going to die soon anyway. Fortunately for me, somewhere deep inside me lived a little voice that said something along the lines of "yeah, that's one way to look at it, but another way to look at it is why not make whatever time you have here count for something. Instead of worrying about what you're going to get OUT of life, why don't you focus on what you're going to put INTO it." That became my guiding voice. I've lived a full, enriching life. I've given a lot, and I've gotten even more in return. I'm 54 years old now. Who ever would have guessed? Certainly not my parents, definitely not my doctors. I've had many bad times, a few near death experiences. I've been very stubborn and very lucky. But I am poignantly aware that death could happen at any moment. So I try to do what LisaV's husband said - live each day as if it's both the last AND the first of many more. Also, I am a great fan of the pity parties. Woe is me, this isn't fair, it's just too much. All of that's true. But pity parties need a time limit. I've learned to limit mine to ten minutes at a setting. Go full out and wallow in the pity. Then it's time to put away the streamers and balloons and go on about the beautiful business of living. At least for as long as you can.

Debi
54 w/cf

 

[Debi]

There is only one thing I am sure of, and that is that none of us really knows what the "right" thing to do is. The right thing is different for everyone. For me, even though the sweat tests never diagnosed cf, my parents and doctors knew it was something bad and that my life expectancy was not going to be normal, and they were honest with me from early childhood. I remember wondering in my junior year in high school what the point of doing well was if I was just going to die soon anyway. Fortunately for me, somewhere deep inside me lived a little voice that said something along the lines of "yeah, that's one way to look at it, but another way to look at it is why not make whatever time you have here count for something. Instead of worrying about what you're going to get OUT of life, why don't you focus on what you're going to put INTO it." That became my guiding voice. I've lived a full, enriching life. I've given a lot, and I've gotten even more in return. I'm 54 years old now. Who ever would have guessed? Certainly not my parents, definitely not my doctors. I've had many bad times, a few near death experiences. I've been very stubborn and very lucky. But I am poignantly aware that death could happen at any moment. So I try to do what LisaV's husband said - live each day as if it's both the last AND the first of many more. Also, I am a great fan of the pity parties. Woe is me, this isn't fair, it's just too much. All of that's true. But pity parties need a time limit. I've learned to limit mine to ten minutes at a setting. Go full out and wallow in the pity. Then it's time to put away the streamers and balloons and go on about the beautiful business of living. At least for as long as you can.

Debi
54 w/cf