Another morbid question...

ReneeP · Jul 22, 2008

Obviously there are several factors playing into the health of a CF patient. It can't be denied that parenting plays a certain role. But that is definately not the only that that matters. You can look at siblings with CF and see how differnt they are even though they had the same mutations and the same parents.

I have a friend who I went to school with who has 2 daughters with CF, just like I do. All four of the girls are DDF508. Yet their disease is so different. Her youngest daughter was at 20% lung function at 9 years of age. She has never been able to go to school or live a "normal" life... yet her sister goes to school, is a cheerleader, etc.

But, take the parents out of the equation... give the kids parents who don't know how or don't care to know how to take care of them and how much worse would they do?

Jennifer -

I read through Haley's CaringBridge site right after she passed. It ripped my heart out. I was up all night reading and sobbing. She was so close in age to my daughter and they look remarkably similar. As much as my heart hurt while I was reading through the site, I can't even imagine what you must be going through. My heart also breaks for her little sister. My prayers are with you and your family through this time of adjustment.

Oh, and please don't let the comments about a parents effect on a child's health bother you. There is no doubt you did everything in your power for Haley. I guess the point that was trying to be made was if you had not done everything you did, Haley would have done much worse and not lived as long as she did. She very obviously had great parents.

ReneeP · Jul 22, 2008

Obviously there are several factors playing into the health of a CF patient. It can't be denied that parenting plays a certain role. But that is definately not the only that that matters. You can look at siblings with CF and see how differnt they are even though they had the same mutations and the same parents.

I have a friend who I went to school with who has 2 daughters with CF, just like I do. All four of the girls are DDF508. Yet their disease is so different. Her youngest daughter was at 20% lung function at 9 years of age. She has never been able to go to school or live a "normal" life... yet her sister goes to school, is a cheerleader, etc.

But, take the parents out of the equation... give the kids parents who don't know how or don't care to know how to take care of them and how much worse would they do?

Jennifer -

I read through Haley's CaringBridge site right after she passed. It ripped my heart out. I was up all night reading and sobbing. She was so close in age to my daughter and they look remarkably similar. As much as my heart hurt while I was reading through the site, I can't even imagine what you must be going through. My heart also breaks for her little sister. My prayers are with you and your family through this time of adjustment.

Oh, and please don't let the comments about a parents effect on a child's health bother you. There is no doubt you did everything in your power for Haley. I guess the point that was trying to be made was if you had not done everything you did, Haley would have done much worse and not lived as long as she did. She very obviously had great parents.

ReneeP · Jul 22, 2008

Obviously there are several factors playing into the health of a CF patient. It can't be denied that parenting plays a certain role. But that is definately not the only that that matters. You can look at siblings with CF and see how differnt they are even though they had the same mutations and the same parents.

I have a friend who I went to school with who has 2 daughters with CF, just like I do. All four of the girls are DDF508. Yet their disease is so different. Her youngest daughter was at 20% lung function at 9 years of age. She has never been able to go to school or live a "normal" life... yet her sister goes to school, is a cheerleader, etc.

But, take the parents out of the equation... give the kids parents who don't know how or don't care to know how to take care of them and how much worse would they do?

Jennifer -

I read through Haley's CaringBridge site right after she passed. It ripped my heart out. I was up all night reading and sobbing. She was so close in age to my daughter and they look remarkably similar. As much as my heart hurt while I was reading through the site, I can't even imagine what you must be going through. My heart also breaks for her little sister. My prayers are with you and your family through this time of adjustment.

Oh, and please don't let the comments about a parents effect on a child's health bother you. There is no doubt you did everything in your power for Haley. I guess the point that was trying to be made was if you had not done everything you did, Haley would have done much worse and not lived as long as she did. She very obviously had great parents.

ReneeP · Jul 22, 2008

Obviously there are several factors playing into the health of a CF patient. It can't be denied that parenting plays a certain role. But that is definately not the only that that matters. You can look at siblings with CF and see how differnt they are even though they had the same mutations and the same parents.

I have a friend who I went to school with who has 2 daughters with CF, just like I do. All four of the girls are DDF508. Yet their disease is so different. Her youngest daughter was at 20% lung function at 9 years of age. She has never been able to go to school or live a "normal" life... yet her sister goes to school, is a cheerleader, etc.

But, take the parents out of the equation... give the kids parents who don't know how or don't care to know how to take care of them and how much worse would they do?

Jennifer -

I read through Haley's CaringBridge site right after she passed. It ripped my heart out. I was up all night reading and sobbing. She was so close in age to my daughter and they look remarkably similar. As much as my heart hurt while I was reading through the site, I can't even imagine what you must be going through. My heart also breaks for her little sister. My prayers are with you and your family through this time of adjustment.

Oh, and please don't let the comments about a parents effect on a child's health bother you. There is no doubt you did everything in your power for Haley. I guess the point that was trying to be made was if you had not done everything you did, Haley would have done much worse and not lived as long as she did. She very obviously had great parents.

ReneeP · Jul 22, 2008

Obviously there are several factors playing into the health of a CF patient. It can't be denied that parenting plays a certain role. But that is definately not the only that that matters. You can look at siblings with CF and see how differnt they are even though they had the same mutations and the same parents.
 
 I have a friend who I went to school with who has 2 daughters with CF, just like I do. All four of the girls are DDF508. Yet their disease is so different. Her youngest daughter was at 20% lung function at 9 years of age. She has never been able to go to school or live a "normal" life... yet her sister goes to school, is a cheerleader, etc.
 
 But, take the parents out of the equation... give the kids parents who don't know how or don't care to know how to take care of them and how much worse would they do?
 
 Jennifer -
 
 I read through Haley's CaringBridge site right after she passed. It ripped my heart out. I was up all night reading and sobbing. She was so close in age to my daughter and they look remarkably similar. As much as my heart hurt while I was reading through the site, I can't even imagine what you must be going through. My heart also breaks for her little sister. My prayers are with you and your family through this time of adjustment.
 
 Oh, and please don't let the comments about a parents effect on a child's health bother you. There is no doubt you did everything in your power for Haley. I guess the point that was trying to be made was if you had not done everything you did, Haley would have done much worse and not lived as long as she did. She very obviously had great parents.

carrierae21 · Jul 23, 2008

I just wanted to say thanks for understanding my post... I was never directing my comments at any one specific set of parents, nor was I saying that parenting is the only determining factor. I was mearly stating that parenting does matter. Nor was I saying that doctors are useless, but that if the parents aren't as involved as they could be then the doctors can't help quite as much b/c we all know that the parents are the best advocate for their children. You know better than anyone else when something is not right with your child and that guides the doctors in the right direction. Again, I certainly didn't mean to offend anyone and I do appreciate the support from those that did see my point of view. I will try not to offend in the future...

carrierae21 · Jul 23, 2008

I just wanted to say thanks for understanding my post... I was never directing my comments at any one specific set of parents, nor was I saying that parenting is the only determining factor. I was mearly stating that parenting does matter. Nor was I saying that doctors are useless, but that if the parents aren't as involved as they could be then the doctors can't help quite as much b/c we all know that the parents are the best advocate for their children. You know better than anyone else when something is not right with your child and that guides the doctors in the right direction. Again, I certainly didn't mean to offend anyone and I do appreciate the support from those that did see my point of view. I will try not to offend in the future...

carrierae21 · Jul 23, 2008

I just wanted to say thanks for understanding my post... I was never directing my comments at any one specific set of parents, nor was I saying that parenting is the only determining factor. I was mearly stating that parenting does matter. Nor was I saying that doctors are useless, but that if the parents aren't as involved as they could be then the doctors can't help quite as much b/c we all know that the parents are the best advocate for their children. You know better than anyone else when something is not right with your child and that guides the doctors in the right direction. Again, I certainly didn't mean to offend anyone and I do appreciate the support from those that did see my point of view. I will try not to offend in the future...

carrierae21 · Jul 23, 2008

I just wanted to say thanks for understanding my post... I was never directing my comments at any one specific set of parents, nor was I saying that parenting is the only determining factor. I was mearly stating that parenting does matter. Nor was I saying that doctors are useless, but that if the parents aren't as involved as they could be then the doctors can't help quite as much b/c we all know that the parents are the best advocate for their children. You know better than anyone else when something is not right with your child and that guides the doctors in the right direction. Again, I certainly didn't mean to offend anyone and I do appreciate the support from those that did see my point of view. I will try not to offend in the future...

carrierae21 · Jul 23, 2008

I just wanted to say thanks for understanding my post... I was never directing my comments at any one specific set of parents, nor was I saying that parenting is the only determining factor. I was mearly stating that parenting does matter. Nor was I saying that doctors are useless, but that if the parents aren't as involved as they could be then the doctors can't help quite as much b/c we all know that the parents are the best advocate for their children. You know better than anyone else when something is not right with your child and that guides the doctors in the right direction. Again, I certainly didn't mean to offend anyone and I do appreciate the support from those that did see my point of view. I will try not to offend in the future...

paws · Jul 23, 2008

I can't agree that most of it is parenting. I've reached the age of 44 by the grace of God. When I was younger, I had mild symptoms (no digestive problems to speak of), but the doctors had no clue. I didn't have lung involvement until my 20's. Even then, it took seeing several doctors before I was diagnosed.

My mother did her best when I was young, but when the doctor chalked it up to allergies, that's what she thought it was. I had a wonderful father who was a heavy smoker. I was pretty non-compliant for several years after diagnosis, but I'm still pretty healthy.

I loved my parents dearly (they've both passed on now), but I can't say they are what got me to here health-wise.

I'm sorry for you parents who have had to deal with this awful disease. It's not fun to be the patient, but I simply can not imagine having to deal with losing a child...period.

paws · Jul 23, 2008

I can't agree that most of it is parenting. I've reached the age of 44 by the grace of God. When I was younger, I had mild symptoms (no digestive problems to speak of), but the doctors had no clue. I didn't have lung involvement until my 20's. Even then, it took seeing several doctors before I was diagnosed.

My mother did her best when I was young, but when the doctor chalked it up to allergies, that's what she thought it was. I had a wonderful father who was a heavy smoker. I was pretty non-compliant for several years after diagnosis, but I'm still pretty healthy.

I loved my parents dearly (they've both passed on now), but I can't say they are what got me to here health-wise.

I'm sorry for you parents who have had to deal with this awful disease. It's not fun to be the patient, but I simply can not imagine having to deal with losing a child...period.

paws · Jul 23, 2008

I can't agree that most of it is parenting. I've reached the age of 44 by the grace of God. When I was younger, I had mild symptoms (no digestive problems to speak of), but the doctors had no clue. I didn't have lung involvement until my 20's. Even then, it took seeing several doctors before I was diagnosed.

My mother did her best when I was young, but when the doctor chalked it up to allergies, that's what she thought it was. I had a wonderful father who was a heavy smoker. I was pretty non-compliant for several years after diagnosis, but I'm still pretty healthy.

I loved my parents dearly (they've both passed on now), but I can't say they are what got me to here health-wise.

I'm sorry for you parents who have had to deal with this awful disease. It's not fun to be the patient, but I simply can not imagine having to deal with losing a child...period.

paws · Jul 23, 2008

I can't agree that most of it is parenting. I've reached the age of 44 by the grace of God. When I was younger, I had mild symptoms (no digestive problems to speak of), but the doctors had no clue. I didn't have lung involvement until my 20's. Even then, it took seeing several doctors before I was diagnosed.

My mother did her best when I was young, but when the doctor chalked it up to allergies, that's what she thought it was. I had a wonderful father who was a heavy smoker. I was pretty non-compliant for several years after diagnosis, but I'm still pretty healthy.

I loved my parents dearly (they've both passed on now), but I can't say they are what got me to here health-wise.

I'm sorry for you parents who have had to deal with this awful disease. It's not fun to be the patient, but I simply can not imagine having to deal with losing a child...period.

paws · Jul 23, 2008

I can't agree that most of it is parenting. I've reached the age of 44 by the grace of God. When I was younger, I had mild symptoms (no digestive problems to speak of), but the doctors had no clue. I didn't have lung involvement until my 20's. Even then, it took seeing several doctors before I was diagnosed.
 
 My mother did her best when I was young, but when the doctor chalked it up to allergies, that's what she thought it was. I had a wonderful father who was a heavy smoker. I was pretty non-compliant for several years after diagnosis, but I'm still pretty healthy.
 
 I loved my parents dearly (they've both passed on now), but I can't say they are what got me to here health-wise.
 
 I'm sorry for you parents who have had to deal with this awful disease. It's not fun to be the patient, but I simply can not imagine having to deal with losing a child...period.

Cherylwithone · Jul 23, 2008

I think the parents that ask questions of others and really want the information and they do seek it out are good parents. I know during some of my daughters stay at the hospital, we have seen parents drop their child off and just let the staff deal with them because they need a break or something else. I think that is what Carrie is refering to. THen you have us parents that would go to the end of the earth to do everything right and it does'nt work. Jennifer did everything in her power, Victoria is doing everything in hers. The moms here are not bad parents. They are trying to learn. My life is my daughter yet we always seem to get bad news no matter what. It's just how life is. Some have all the luck, some have a little, and then there are the ones that can't catch a break.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 23, 2008

I think the parents that ask questions of others and really want the information and they do seek it out are good parents. I know during some of my daughters stay at the hospital, we have seen parents drop their child off and just let the staff deal with them because they need a break or something else. I think that is what Carrie is refering to. THen you have us parents that would go to the end of the earth to do everything right and it does'nt work. Jennifer did everything in her power, Victoria is doing everything in hers. The moms here are not bad parents. They are trying to learn. My life is my daughter yet we always seem to get bad news no matter what. It's just how life is. Some have all the luck, some have a little, and then there are the ones that can't catch a break.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 23, 2008

I think the parents that ask questions of others and really want the information and they do seek it out are good parents. I know during some of my daughters stay at the hospital, we have seen parents drop their child off and just let the staff deal with them because they need a break or something else. I think that is what Carrie is refering to. THen you have us parents that would go to the end of the earth to do everything right and it does'nt work. Jennifer did everything in her power, Victoria is doing everything in hers. The moms here are not bad parents. They are trying to learn. My life is my daughter yet we always seem to get bad news no matter what. It's just how life is. Some have all the luck, some have a little, and then there are the ones that can't catch a break.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 23, 2008

I think the parents that ask questions of others and really want the information and they do seek it out are good parents. I know during some of my daughters stay at the hospital, we have seen parents drop their child off and just let the staff deal with them because they need a break or something else. I think that is what Carrie is refering to. THen you have us parents that would go to the end of the earth to do everything right and it does'nt work. Jennifer did everything in her power, Victoria is doing everything in hers. The moms here are not bad parents. They are trying to learn. My life is my daughter yet we always seem to get bad news no matter what. It's just how life is. Some have all the luck, some have a little, and then there are the ones that can't catch a break.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 23, 2008

I think the parents that ask questions of others and really want the information and they do seek it out are good parents. I know during some of my daughters stay at the hospital, we have seen parents drop their child off and just let the staff deal with them because they need a break or something else. I think that is what Carrie is refering to. THen you have us parents that would go to the end of the earth to do everything right and it does'nt work. Jennifer did everything in her power, Victoria is doing everything in hers. The moms here are not bad parents. They are trying to learn. My life is my daughter yet we always seem to get bad news no matter what. It's just how life is. Some have all the luck, some have a little, and then there are the ones that can't catch a break.
 
 Cheryl mom to Malora 15 w/cf

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