Pen Pals for CF Kids?

brewz2 · Mar 3, 2008

wow, i didn't initially click into this topic, but I'm glad I did. I've been having the same thoughts about how, or when i would have to explain more to my children about the disease that they have, and what they may have to go through. My daughter, who is almost 7, doesn't really comprehend yet what having cf means, she doesn't understand or know that it's gonna be a lifelong battle. I try to just just rationalize in my head that nobody knows the future, and we're not promised tomorrow - nobody really knows how many days they have on this earth.

Just like Terry mentioned, I don't really talk much about the cf with my husband. I mean, we discuss the kids health, and treatments, and all that kind of stuff, but I just don't like to talk to him about the future of the kids - I already get upset thinking about, and I don't want to bring him down with me. I tend to hold it in, and try to put on my strong face for everyone, but inside, I'm terrified for what their future holds. While I was watching tv with my husband, we came across the people in GA that won that huge lottery, and I mentioned to him that I truly from the bottom of my heart just would want to win the lottery, only for the kids sake - just to know that they'll never have to worry about health insurance, or money, or worry over losing a job b/c of their health. I could see it made him start thinking about their future, and I immediately changed the subject.

I want both of my kids to have a life that isn't limited b/c of cf, but I worry about the "what if's" way too much. Sorry if this is a downer to read, but I guess it's comforting to know that I'm not the only out there with the the racing thoughts in my head.

Thanks for listening.

Tracey, Mommy to Sydney, 6 and Seth, 2 - both w/cf DF508

brewz2 · Mar 3, 2008

wow, i didn't initially click into this topic, but I'm glad I did. I've been having the same thoughts about how, or when i would have to explain more to my children about the disease that they have, and what they may have to go through. My daughter, who is almost 7, doesn't really comprehend yet what having cf means, she doesn't understand or know that it's gonna be a lifelong battle. I try to just just rationalize in my head that nobody knows the future, and we're not promised tomorrow - nobody really knows how many days they have on this earth.

Just like Terry mentioned, I don't really talk much about the cf with my husband. I mean, we discuss the kids health, and treatments, and all that kind of stuff, but I just don't like to talk to him about the future of the kids - I already get upset thinking about, and I don't want to bring him down with me. I tend to hold it in, and try to put on my strong face for everyone, but inside, I'm terrified for what their future holds. While I was watching tv with my husband, we came across the people in GA that won that huge lottery, and I mentioned to him that I truly from the bottom of my heart just would want to win the lottery, only for the kids sake - just to know that they'll never have to worry about health insurance, or money, or worry over losing a job b/c of their health. I could see it made him start thinking about their future, and I immediately changed the subject.

I want both of my kids to have a life that isn't limited b/c of cf, but I worry about the "what if's" way too much. Sorry if this is a downer to read, but I guess it's comforting to know that I'm not the only out there with the the racing thoughts in my head.

Thanks for listening.

Tracey, Mommy to Sydney, 6 and Seth, 2 - both w/cf DF508

brewz2 · Mar 3, 2008

wow, i didn't initially click into this topic, but I'm glad I did. I've been having the same thoughts about how, or when i would have to explain more to my children about the disease that they have, and what they may have to go through. My daughter, who is almost 7, doesn't really comprehend yet what having cf means, she doesn't understand or know that it's gonna be a lifelong battle. I try to just just rationalize in my head that nobody knows the future, and we're not promised tomorrow - nobody really knows how many days they have on this earth.

Just like Terry mentioned, I don't really talk much about the cf with my husband. I mean, we discuss the kids health, and treatments, and all that kind of stuff, but I just don't like to talk to him about the future of the kids - I already get upset thinking about, and I don't want to bring him down with me. I tend to hold it in, and try to put on my strong face for everyone, but inside, I'm terrified for what their future holds. While I was watching tv with my husband, we came across the people in GA that won that huge lottery, and I mentioned to him that I truly from the bottom of my heart just would want to win the lottery, only for the kids sake - just to know that they'll never have to worry about health insurance, or money, or worry over losing a job b/c of their health. I could see it made him start thinking about their future, and I immediately changed the subject.

I want both of my kids to have a life that isn't limited b/c of cf, but I worry about the "what if's" way too much. Sorry if this is a downer to read, but I guess it's comforting to know that I'm not the only out there with the the racing thoughts in my head.

Thanks for listening.

Tracey, Mommy to Sydney, 6 and Seth, 2 - both w/cf DF508

brewz2 · Mar 3, 2008

wow, i didn't initially click into this topic, but I'm glad I did. I've been having the same thoughts about how, or when i would have to explain more to my children about the disease that they have, and what they may have to go through. My daughter, who is almost 7, doesn't really comprehend yet what having cf means, she doesn't understand or know that it's gonna be a lifelong battle. I try to just just rationalize in my head that nobody knows the future, and we're not promised tomorrow - nobody really knows how many days they have on this earth.

Just like Terry mentioned, I don't really talk much about the cf with my husband. I mean, we discuss the kids health, and treatments, and all that kind of stuff, but I just don't like to talk to him about the future of the kids - I already get upset thinking about, and I don't want to bring him down with me. I tend to hold it in, and try to put on my strong face for everyone, but inside, I'm terrified for what their future holds. While I was watching tv with my husband, we came across the people in GA that won that huge lottery, and I mentioned to him that I truly from the bottom of my heart just would want to win the lottery, only for the kids sake - just to know that they'll never have to worry about health insurance, or money, or worry over losing a job b/c of their health. I could see it made him start thinking about their future, and I immediately changed the subject.

I want both of my kids to have a life that isn't limited b/c of cf, but I worry about the "what if's" way too much. Sorry if this is a downer to read, but I guess it's comforting to know that I'm not the only out there with the the racing thoughts in my head.

Thanks for listening.

Tracey, Mommy to Sydney, 6 and Seth, 2 - both w/cf DF508

brewz2 · Mar 3, 2008

wow, i didn't initially click into this topic, but I'm glad I did. I've been having the same thoughts about how, or when i would have to explain more to my children about the disease that they have, and what they may have to go through. My daughter, who is almost 7, doesn't really comprehend yet what having cf means, she doesn't understand or know that it's gonna be a lifelong battle. I try to just just rationalize in my head that nobody knows the future, and we're not promised tomorrow - nobody really knows how many days they have on this earth.
 
 Just like Terry mentioned, I don't really talk much about the cf with my husband. I mean, we discuss the kids health, and treatments, and all that kind of stuff, but I just don't like to talk to him about the future of the kids - I already get upset thinking about, and I don't want to bring him down with me. I tend to hold it in, and try to put on my strong face for everyone, but inside, I'm terrified for what their future holds. While I was watching tv with my husband, we came across the people in GA that won that huge lottery, and I mentioned to him that I truly from the bottom of my heart just would want to win the lottery, only for the kids sake - just to know that they'll never have to worry about health insurance, or money, or worry over losing a job b/c of their health. I could see it made him start thinking about their future, and I immediately changed the subject.
 
 I want both of my kids to have a life that isn't limited b/c of cf, but I worry about the "what if's" way too much. Sorry if this is a downer to read, but I guess it's comforting to know that I'm not the only out there with the the racing thoughts in my head.
 
 Thanks for listening.
 
 Tracey, Mommy to Sydney, 6 and Seth, 2 - both w/cf DF508

Terry · Mar 3, 2008

brewz2 -

You hit it right on the head when you said none of us know how many days we have on this earth. I know what you mean about rationalizing things. I remember one time when my mother-in-law was getting upset about Marissa's prognosis soon after she was diagnosed (she was 3 going on 4 and the doctors said she probably wouldn't make it past nine, YIPPEE! they were wrong, she responded very well to treatment, and will be nine in April!). But to make her see things more clearly I said to her that we should in a way be grateful to have found out what she has and know that we need to be sure to show her we love her everyday, and take time to be with her everyday. That my son (her grandson) doesn't have a serious diagnosis, but he could get hit by a car the next time he rode his bike and we wouldn't have had a warning and maybe we would have forgotten to say good bye to him before he left. Boy, did that upset me after I said it and lead to a whole new train of thoughts.

I think we ALL need to just love everyone as much as we possibly can. And not do it because we think someone has an expiration date. I refused to believe Marissa wouldn't make it to 9. Maybe that was just me being hard headed back then. But now I just keep believing and hoping that things have only gotten better for CF patients in the past 20 years, and there is no reason that won't continue on into the next twenty years.

Sorry if I brought anyone down as well...

Terry

Terry · Mar 3, 2008

brewz2 -

You hit it right on the head when you said none of us know how many days we have on this earth. I know what you mean about rationalizing things. I remember one time when my mother-in-law was getting upset about Marissa's prognosis soon after she was diagnosed (she was 3 going on 4 and the doctors said she probably wouldn't make it past nine, YIPPEE! they were wrong, she responded very well to treatment, and will be nine in April!). But to make her see things more clearly I said to her that we should in a way be grateful to have found out what she has and know that we need to be sure to show her we love her everyday, and take time to be with her everyday. That my son (her grandson) doesn't have a serious diagnosis, but he could get hit by a car the next time he rode his bike and we wouldn't have had a warning and maybe we would have forgotten to say good bye to him before he left. Boy, did that upset me after I said it and lead to a whole new train of thoughts.

I think we ALL need to just love everyone as much as we possibly can. And not do it because we think someone has an expiration date. I refused to believe Marissa wouldn't make it to 9. Maybe that was just me being hard headed back then. But now I just keep believing and hoping that things have only gotten better for CF patients in the past 20 years, and there is no reason that won't continue on into the next twenty years.

Sorry if I brought anyone down as well...

Terry

Terry · Mar 3, 2008

brewz2 -

You hit it right on the head when you said none of us know how many days we have on this earth. I know what you mean about rationalizing things. I remember one time when my mother-in-law was getting upset about Marissa's prognosis soon after she was diagnosed (she was 3 going on 4 and the doctors said she probably wouldn't make it past nine, YIPPEE! they were wrong, she responded very well to treatment, and will be nine in April!). But to make her see things more clearly I said to her that we should in a way be grateful to have found out what she has and know that we need to be sure to show her we love her everyday, and take time to be with her everyday. That my son (her grandson) doesn't have a serious diagnosis, but he could get hit by a car the next time he rode his bike and we wouldn't have had a warning and maybe we would have forgotten to say good bye to him before he left. Boy, did that upset me after I said it and lead to a whole new train of thoughts.

I think we ALL need to just love everyone as much as we possibly can. And not do it because we think someone has an expiration date. I refused to believe Marissa wouldn't make it to 9. Maybe that was just me being hard headed back then. But now I just keep believing and hoping that things have only gotten better for CF patients in the past 20 years, and there is no reason that won't continue on into the next twenty years.

Sorry if I brought anyone down as well...

Terry

Terry · Mar 3, 2008

brewz2 -

You hit it right on the head when you said none of us know how many days we have on this earth. I know what you mean about rationalizing things. I remember one time when my mother-in-law was getting upset about Marissa's prognosis soon after she was diagnosed (she was 3 going on 4 and the doctors said she probably wouldn't make it past nine, YIPPEE! they were wrong, she responded very well to treatment, and will be nine in April!). But to make her see things more clearly I said to her that we should in a way be grateful to have found out what she has and know that we need to be sure to show her we love her everyday, and take time to be with her everyday. That my son (her grandson) doesn't have a serious diagnosis, but he could get hit by a car the next time he rode his bike and we wouldn't have had a warning and maybe we would have forgotten to say good bye to him before he left. Boy, did that upset me after I said it and lead to a whole new train of thoughts.

I think we ALL need to just love everyone as much as we possibly can. And not do it because we think someone has an expiration date. I refused to believe Marissa wouldn't make it to 9. Maybe that was just me being hard headed back then. But now I just keep believing and hoping that things have only gotten better for CF patients in the past 20 years, and there is no reason that won't continue on into the next twenty years.

Sorry if I brought anyone down as well...

Terry

Terry · Mar 3, 2008

brewz2 -
 
 You hit it right on the head when you said none of us know how many days we have on this earth. I know what you mean about rationalizing things. I remember one time when my mother-in-law was getting upset about Marissa's prognosis soon after she was diagnosed (she was 3 going on 4 and the doctors said she probably wouldn't make it past nine, YIPPEE! they were wrong, she responded very well to treatment, and will be nine in April!). But to make her see things more clearly I said to her that we should in a way be grateful to have found out what she has and know that we need to be sure to show her we love her everyday, and take time to be with her everyday. That my son (her grandson) doesn't have a serious diagnosis, but he could get hit by a car the next time he rode his bike and we wouldn't have had a warning and maybe we would have forgotten to say good bye to him before he left. Boy, did that upset me after I said it and lead to a whole new train of thoughts.
 
 
 I think we ALL need to just love everyone as much as we possibly can. And not do it because we think someone has an expiration date. I refused to believe Marissa wouldn't make it to 9. Maybe that was just me being hard headed back then. But now I just keep believing and hoping that things have only gotten better for CF patients in the past 20 years, and there is no reason that won't continue on into the next twenty years.
 
 Sorry if I brought anyone down as well...
 
 Terry

Sheridan · Mar 7, 2008

Hi, I am from Australia nad I just stumbled across this site searching for something so similar for my 8yo CF boy. He has stopped taking his medication at school becuase he feels 'lonely' I would love for him to chat / email someone else who 'knows' what it is to have CF. i mean i can explain it and talk about it but I don't and never can 'understand' it like him.

We just had the big chat this morning about how he can die from not looking after his CF properly, he took it well, Jordan has always known he has CF I can't remember a time when we haven't talked about it. We have had some discussion about the fact that it is life threatening before, but I have never said the word die, but he asked the question today and so i told him.

I think especially hard for him now as his baby brother (born in Aug 07) has CF too, and he feels that he has to be strong for both of them.

I would love to find someway of having him talk to others like him.

Sheridan

Sheridan · Mar 7, 2008

Hi, I am from Australia nad I just stumbled across this site searching for something so similar for my 8yo CF boy. He has stopped taking his medication at school becuase he feels 'lonely' I would love for him to chat / email someone else who 'knows' what it is to have CF. i mean i can explain it and talk about it but I don't and never can 'understand' it like him.

We just had the big chat this morning about how he can die from not looking after his CF properly, he took it well, Jordan has always known he has CF I can't remember a time when we haven't talked about it. We have had some discussion about the fact that it is life threatening before, but I have never said the word die, but he asked the question today and so i told him.

I think especially hard for him now as his baby brother (born in Aug 07) has CF too, and he feels that he has to be strong for both of them.

I would love to find someway of having him talk to others like him.

Sheridan

Sheridan · Mar 7, 2008

Hi, I am from Australia nad I just stumbled across this site searching for something so similar for my 8yo CF boy. He has stopped taking his medication at school becuase he feels 'lonely' I would love for him to chat / email someone else who 'knows' what it is to have CF. i mean i can explain it and talk about it but I don't and never can 'understand' it like him.

We just had the big chat this morning about how he can die from not looking after his CF properly, he took it well, Jordan has always known he has CF I can't remember a time when we haven't talked about it. We have had some discussion about the fact that it is life threatening before, but I have never said the word die, but he asked the question today and so i told him.

I think especially hard for him now as his baby brother (born in Aug 07) has CF too, and he feels that he has to be strong for both of them.

I would love to find someway of having him talk to others like him.

Sheridan

Sheridan · Mar 7, 2008

Hi, I am from Australia nad I just stumbled across this site searching for something so similar for my 8yo CF boy. He has stopped taking his medication at school becuase he feels 'lonely' I would love for him to chat / email someone else who 'knows' what it is to have CF. i mean i can explain it and talk about it but I don't and never can 'understand' it like him.

We just had the big chat this morning about how he can die from not looking after his CF properly, he took it well, Jordan has always known he has CF I can't remember a time when we haven't talked about it. We have had some discussion about the fact that it is life threatening before, but I have never said the word die, but he asked the question today and so i told him.

I think especially hard for him now as his baby brother (born in Aug 07) has CF too, and he feels that he has to be strong for both of them.

I would love to find someway of having him talk to others like him.

Sheridan

Sheridan · Mar 7, 2008

Hi, I am from Australia nad I just stumbled across this site searching for something so similar for my 8yo CF boy. He has stopped taking his medication at school becuase he feels 'lonely' I would love for him to chat / email someone else who 'knows' what it is to have CF. i mean i can explain it and talk about it but I don't and never can 'understand' it like him.
 
 We just had the big chat this morning about how he can die from not looking after his CF properly, he took it well, Jordan has always known he has CF I can't remember a time when we haven't talked about it. We have had some discussion about the fact that it is life threatening before, but I have never said the word die, but he asked the question today and so i told him.
 
 I think especially hard for him now as his baby brother (born in Aug 07) has CF too, and he feels that he has to be strong for both of them.
 
 I would love to find someway of having him talk to others like him.
 
 Sheridan

malay13 · Mar 7, 2008

My 5 year old daughter would love to have a pen pal. She is in Kindergarten and just learning how to write, so it could serve 2 purposes. If anyone is interested, and I think it's a great idea, email me at malay13@verizon.net and we can exchange information. She's really into making stuff like hearts and cutting them out, and drawing pictures. She always asks, can we mail this to so and so. If she had another CF kid to mail this kind of stuff to it would really brighten her day.

Ron
<a target=_blank class=ftalternatingbarlinklarge href="http://cfparenting.blogspot.com/
">http://cfparenting.blogspot.com/
</a>

malay13 · Mar 7, 2008

My 5 year old daughter would love to have a pen pal. She is in Kindergarten and just learning how to write, so it could serve 2 purposes. If anyone is interested, and I think it's a great idea, email me at malay13@verizon.net and we can exchange information. She's really into making stuff like hearts and cutting them out, and drawing pictures. She always asks, can we mail this to so and so. If she had another CF kid to mail this kind of stuff to it would really brighten her day.

Ron
<a target=_blank class=ftalternatingbarlinklarge href="http://cfparenting.blogspot.com/
">http://cfparenting.blogspot.com/
</a>

malay13 · Mar 7, 2008

My 5 year old daughter would love to have a pen pal. She is in Kindergarten and just learning how to write, so it could serve 2 purposes. If anyone is interested, and I think it's a great idea, email me at malay13@verizon.net and we can exchange information. She's really into making stuff like hearts and cutting them out, and drawing pictures. She always asks, can we mail this to so and so. If she had another CF kid to mail this kind of stuff to it would really brighten her day.

Ron
<a target=_blank class=ftalternatingbarlinklarge href="http://cfparenting.blogspot.com/
">http://cfparenting.blogspot.com/
</a>

malay13 · Mar 7, 2008

My 5 year old daughter would love to have a pen pal. She is in Kindergarten and just learning how to write, so it could serve 2 purposes. If anyone is interested, and I think it's a great idea, email me at malay13@verizon.net and we can exchange information. She's really into making stuff like hearts and cutting them out, and drawing pictures. She always asks, can we mail this to so and so. If she had another CF kid to mail this kind of stuff to it would really brighten her day.

Ron
<a target=_blank class=ftalternatingbarlinklarge href="http://cfparenting.blogspot.com/
">http://cfparenting.blogspot.com/
</a>

malay13 · Mar 7, 2008

My 5 year old daughter would love to have a pen pal. She is in Kindergarten and just learning how to write, so it could serve 2 purposes. If anyone is interested, and I think it's a great idea, email me at malay13@verizon.net and we can exchange information. She's really into making stuff like hearts and cutting them out, and drawing pictures. She always asks, can we mail this to so and so. If she had another CF kid to mail this kind of stuff to it would really brighten her day.
 
 
 Ron
 <a target=_blank class=ftalternatingbarlinklarge href="http://cfparenting.blogspot.com/
">http://cfparenting.blogspot.com/
</a>

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