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

[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

 

[mcbrash]

Jane

I will try to find that email that Matt sent me. There are so many discs to go through so it might take me a few days, but I'll do my best.

Sandy

 

[mcbrash]

Jane

I will try to find that email that Matt sent me. There are so many discs to go through so it might take me a few days, but I'll do my best.

Sandy

 

[mcbrash]

Jane

I will try to find that email that Matt sent me. There are so many discs to go through so it might take me a few days, but I'll do my best.

Sandy

 

[welshgirl]

ahhh!!!! what an incredibly moving thread this has turned out to be <img src="i/expressions/face-icon-small-smile.gif" border="0">. if i've learned one thing it is that there is no right or wrong time to tell your children about their own mortality.

joe is 9 soon and we're undecided about when to tell him that he will have a shortened life. it's a terrifying decision to make but we know we can't put it off forever. i'm inclined to leave it for a couple of years yet.

an "enlightened" parent in joe's old school told her son all about cf and her son promptly told joe he was going to die!!!!! that was not long after he was diagnosed in early 2004. obviously he was really upset and i lied ( and i'm not sorry!!!!!) and told him he wouldn't though we are all going to die sometime. i hope i don't get bashed now!!!!!!

 

[welshgirl]

ahhh!!!! what an incredibly moving thread this has turned out to be <img src="i/expressions/face-icon-small-smile.gif" border="0">. if i've learned one thing it is that there is no right or wrong time to tell your children about their own mortality.

joe is 9 soon and we're undecided about when to tell him that he will have a shortened life. it's a terrifying decision to make but we know we can't put it off forever. i'm inclined to leave it for a couple of years yet.

an "enlightened" parent in joe's old school told her son all about cf and her son promptly told joe he was going to die!!!!! that was not long after he was diagnosed in early 2004. obviously he was really upset and i lied ( and i'm not sorry!!!!!) and told him he wouldn't though we are all going to die sometime. i hope i don't get bashed now!!!!!!

 

[welshgirl]

ahhh!!!! what an incredibly moving thread this has turned out to be <img src="i/expressions/face-icon-small-smile.gif" border="0">. if i've learned one thing it is that there is no right or wrong time to tell your children about their own mortality.

joe is 9 soon and we're undecided about when to tell him that he will have a shortened life. it's a terrifying decision to make but we know we can't put it off forever. i'm inclined to leave it for a couple of years yet.

an "enlightened" parent in joe's old school told her son all about cf and her son promptly told joe he was going to die!!!!! that was not long after he was diagnosed in early 2004. obviously he was really upset and i lied ( and i'm not sorry!!!!!) and told him he wouldn't though we are all going to die sometime. i hope i don't get bashed now!!!!!!

 

[coltsfan715]

Janet ~

Just to prepare you - I am sure SOMEONE will say something a little less than friendly about your post. I can see though why you did it and I probably would have done it initially as well - to calm the child down. I would just suggest that before you do have "the talk" with him that you come up with a good answer as to why you said he would not die from CF when it is possible/likely that he will - though not necessarily at a young (meaning teens) age. I know that would be a question I would ask if it were me as a kid had my mom initially said that to me.

That is all I was going to say - I didn't want you to be caught of guard if that is something he remembers and something he says/asks when you do talk to him.

My parents never denied the life expectancy issues to me - they just never acknowledged that any life expectancy was placed on me. They didn't tell me until I was going to college that they were sorry that I had to bust my butt for scholarships because they had NOT set money aside for me for college. I said it was no problem - alot of kids didn't have money for college and they just said it was not right that they should have been prepared and THEN they told me why they hadn't been. They had been told at every turn - enjoy what time you have with her- she won't make it out of elementary school - she won't make it out of junior high, she won't get her license, she won't graduate high school. They had been thinking - though they never treated many like I was going to die (in a bad way) - that I was not going to be around for college and they wanted me to enjoy life and have opportunities to do other fun things. They had spent what money I would have had for college on family vacations, camps, school activities, extra curriculars and so on. I am glad they did cause I would have probably gotten scholarships anyway lol - and I at least got to have fun with the rest of my time. Yeah but anyway - point to that story ... my parents didn't tell me about any life expectancy I had til I graduated high school or around there (17ish). I had pretty much figured it out - but they had never said that a doc looked them in the face and said "hey enjoy your daugher while you have her - she won't live past the age of 12".


Lindsey

 

[coltsfan715]

Janet ~

Just to prepare you - I am sure SOMEONE will say something a little less than friendly about your post. I can see though why you did it and I probably would have done it initially as well - to calm the child down. I would just suggest that before you do have "the talk" with him that you come up with a good answer as to why you said he would not die from CF when it is possible/likely that he will - though not necessarily at a young (meaning teens) age. I know that would be a question I would ask if it were me as a kid had my mom initially said that to me.

That is all I was going to say - I didn't want you to be caught of guard if that is something he remembers and something he says/asks when you do talk to him.

My parents never denied the life expectancy issues to me - they just never acknowledged that any life expectancy was placed on me. They didn't tell me until I was going to college that they were sorry that I had to bust my butt for scholarships because they had NOT set money aside for me for college. I said it was no problem - alot of kids didn't have money for college and they just said it was not right that they should have been prepared and THEN they told me why they hadn't been. They had been told at every turn - enjoy what time you have with her- she won't make it out of elementary school - she won't make it out of junior high, she won't get her license, she won't graduate high school. They had been thinking - though they never treated many like I was going to die (in a bad way) - that I was not going to be around for college and they wanted me to enjoy life and have opportunities to do other fun things. They had spent what money I would have had for college on family vacations, camps, school activities, extra curriculars and so on. I am glad they did cause I would have probably gotten scholarships anyway lol - and I at least got to have fun with the rest of my time. Yeah but anyway - point to that story ... my parents didn't tell me about any life expectancy I had til I graduated high school or around there (17ish). I had pretty much figured it out - but they had never said that a doc looked them in the face and said "hey enjoy your daugher while you have her - she won't live past the age of 12".


Lindsey

 

[coltsfan715]

Janet ~

Just to prepare you - I am sure SOMEONE will say something a little less than friendly about your post. I can see though why you did it and I probably would have done it initially as well - to calm the child down. I would just suggest that before you do have "the talk" with him that you come up with a good answer as to why you said he would not die from CF when it is possible/likely that he will - though not necessarily at a young (meaning teens) age. I know that would be a question I would ask if it were me as a kid had my mom initially said that to me.

That is all I was going to say - I didn't want you to be caught of guard if that is something he remembers and something he says/asks when you do talk to him.

My parents never denied the life expectancy issues to me - they just never acknowledged that any life expectancy was placed on me. They didn't tell me until I was going to college that they were sorry that I had to bust my butt for scholarships because they had NOT set money aside for me for college. I said it was no problem - alot of kids didn't have money for college and they just said it was not right that they should have been prepared and THEN they told me why they hadn't been. They had been told at every turn - enjoy what time you have with her- she won't make it out of elementary school - she won't make it out of junior high, she won't get her license, she won't graduate high school. They had been thinking - though they never treated many like I was going to die (in a bad way) - that I was not going to be around for college and they wanted me to enjoy life and have opportunities to do other fun things. They had spent what money I would have had for college on family vacations, camps, school activities, extra curriculars and so on. I am glad they did cause I would have probably gotten scholarships anyway lol - and I at least got to have fun with the rest of my time. Yeah but anyway - point to that story ... my parents didn't tell me about any life expectancy I had til I graduated high school or around there (17ish). I had pretty much figured it out - but they had never said that a doc looked them in the face and said "hey enjoy your daugher while you have her - she won't live past the age of 12".


Lindsey

 

[welshgirl]

lindsey, thankyou for your kind words and advice<img src="i/expressions/face-icon-small-happy.gif" border="0"> if i get "bashed" i can understand their point of view but joe was just turned 6 at the time. i'm hoping he won't remember, that probably sounds unrealistic but he has never mentioned it since then. joe does understand that cf is forever and is very serious and that it is important to do his treatments and his meds. we also find that we want joe to "live for today" we try and holiday as much as possible and keep him very busy with hobbies and clubs. he is a happy little soul so we must be doing something right<img src="i/expressions/face-icon-small-smile.gif" border="0"> take care lindsey. i find you to be the voice of reason and it means a huge amount to me and others i bet<img src="i/expressions/heart.gif" border="0">

 

[welshgirl]

lindsey, thankyou for your kind words and advice<img src="i/expressions/face-icon-small-happy.gif" border="0"> if i get "bashed" i can understand their point of view but joe was just turned 6 at the time. i'm hoping he won't remember, that probably sounds unrealistic but he has never mentioned it since then. joe does understand that cf is forever and is very serious and that it is important to do his treatments and his meds. we also find that we want joe to "live for today" we try and holiday as much as possible and keep him very busy with hobbies and clubs. he is a happy little soul so we must be doing something right<img src="i/expressions/face-icon-small-smile.gif" border="0"> take care lindsey. i find you to be the voice of reason and it means a huge amount to me and others i bet<img src="i/expressions/heart.gif" border="0">

 

[welshgirl]

lindsey, thankyou for your kind words and advice<img src="i/expressions/face-icon-small-happy.gif" border="0"> if i get "bashed" i can understand their point of view but joe was just turned 6 at the time. i'm hoping he won't remember, that probably sounds unrealistic but he has never mentioned it since then. joe does understand that cf is forever and is very serious and that it is important to do his treatments and his meds. we also find that we want joe to "live for today" we try and holiday as much as possible and keep him very busy with hobbies and clubs. he is a happy little soul so we must be doing something right<img src="i/expressions/face-icon-small-smile.gif" border="0"> take care lindsey. i find you to be the voice of reason and it means a huge amount to me and others i bet<img src="i/expressions/heart.gif" border="0">

 

[mcbrash]

Lindsey

I can so understand how your parents felt about not setting funds aside for any college funds. When you are told that your child is not going to live any longer than 16/17 that is set in your mind forever, at least with me it was. I tried to give Matt everything that I possibly could, knowing that his life would be cut short and I crammed as much happiness as I could into, what I thought, would be just 16/17 years. Some of this did backfire a little when he got older but looking back now I am glad that he at least, got to see and do things that perhaps would not have been, had we not been told the "life expectancy" of CF. Of course, nowadays, things are different given that CF'ers are living so much longer and parents no longer hear about life expectancy being in the teens.

Janet

I am certainly not going to "bash" you, you did what you thought was the best for your son. I'm not saying that I am right or wrong but you know how cruel kids can be and what your son heard when he was 6, might happen again.........hopefully it won't, but what if? Oh if only our kids came with instructions........

Sandy

 

[mcbrash]

Lindsey

I can so understand how your parents felt about not setting funds aside for any college funds. When you are told that your child is not going to live any longer than 16/17 that is set in your mind forever, at least with me it was. I tried to give Matt everything that I possibly could, knowing that his life would be cut short and I crammed as much happiness as I could into, what I thought, would be just 16/17 years. Some of this did backfire a little when he got older but looking back now I am glad that he at least, got to see and do things that perhaps would not have been, had we not been told the "life expectancy" of CF. Of course, nowadays, things are different given that CF'ers are living so much longer and parents no longer hear about life expectancy being in the teens.

Janet

I am certainly not going to "bash" you, you did what you thought was the best for your son. I'm not saying that I am right or wrong but you know how cruel kids can be and what your son heard when he was 6, might happen again.........hopefully it won't, but what if? Oh if only our kids came with instructions........

Sandy

 

[mcbrash]

Lindsey

I can so understand how your parents felt about not setting funds aside for any college funds. When you are told that your child is not going to live any longer than 16/17 that is set in your mind forever, at least with me it was. I tried to give Matt everything that I possibly could, knowing that his life would be cut short and I crammed as much happiness as I could into, what I thought, would be just 16/17 years. Some of this did backfire a little when he got older but looking back now I am glad that he at least, got to see and do things that perhaps would not have been, had we not been told the "life expectancy" of CF. Of course, nowadays, things are different given that CF'ers are living so much longer and parents no longer hear about life expectancy being in the teens.

Janet

I am certainly not going to "bash" you, you did what you thought was the best for your son. I'm not saying that I am right or wrong but you know how cruel kids can be and what your son heard when he was 6, might happen again.........hopefully it won't, but what if? Oh if only our kids came with instructions........

Sandy

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mcbrash</b></i>

I tried to give Matt everything that I possibly could, knowing that his life would be cut short and I crammed as much happiness as I could


Sandy</end quote></div>

Sandy, this is so true of us too. It is so hard for other people to understand. Even my mom criticized me for having big birthday parties for my boys EVERY year. In my opinion, every year I have my boys, its reason to celebrate.

This year it hit home even harder when Josh was so sick with the mycobacteria in the spring. Knowing they have CF, I am prepared for a certain chain of events to happen in their future. Then the myco flare-up caused a whole new fear that their time might be even shorter than we expected. Reality is not subtle.

You did the right thing Sandy.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mcbrash</b></i>

I tried to give Matt everything that I possibly could, knowing that his life would be cut short and I crammed as much happiness as I could


Sandy</end quote></div>

Sandy, this is so true of us too. It is so hard for other people to understand. Even my mom criticized me for having big birthday parties for my boys EVERY year. In my opinion, every year I have my boys, its reason to celebrate.

This year it hit home even harder when Josh was so sick with the mycobacteria in the spring. Knowing they have CF, I am prepared for a certain chain of events to happen in their future. Then the myco flare-up caused a whole new fear that their time might be even shorter than we expected. Reality is not subtle.

You did the right thing Sandy.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mcbrash</b></i>

I tried to give Matt everything that I possibly could, knowing that his life would be cut short and I crammed as much happiness as I could


Sandy</end quote></div>

Sandy, this is so true of us too. It is so hard for other people to understand. Even my mom criticized me for having big birthday parties for my boys EVERY year. In my opinion, every year I have my boys, its reason to celebrate.

This year it hit home even harder when Josh was so sick with the mycobacteria in the spring. Knowing they have CF, I am prepared for a certain chain of events to happen in their future. Then the myco flare-up caused a whole new fear that their time might be even shorter than we expected. Reality is not subtle.

You did the right thing Sandy.

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>Reality is not subtle.
~Jane</end quote></div>

Oh how right you are ... reality is like a sudden and brutal slap in the face. **whispers to self* "down with reality!"

Lindsey