Another morbid question...

angelhaley

New member
Well, as you can see...this is my first post ever to this site. I read your question, and just can't help but feel upset at the first response you had. My daughter Haley, passed away only 5 weeks ago to CF. She was only 12 years old. What I will tell you is this....Our (my husband and I) entire lives revolved around Haley and taking care of her. We were VERY intuned with her needs, and went as far as God would allow us to take care of her. Haley was the most compliant patient I have ever known, but yet, she was unable to win the battle. The severity level of each patient is so different....the strains of bacteria are very different...every CF patiens body responds differently and you can only pray it will be your child who has the less severe case. We thought we would be the "lucky" one. The one who beat the odds.....that wasn't God's plan. Please take a look at Haley's Caring Bridge site. Read back over the past several months....then you will realize it isn't the parents fault at all.......it is simply this terrible disease. I wish you the best of luck. www.caringbridge.org/visit/haleypalmer
 

angelhaley

New member
Well, as you can see...this is my first post ever to this site. I read your question, and just can't help but feel upset at the first response you had. My daughter Haley, passed away only 5 weeks ago to CF. She was only 12 years old. What I will tell you is this....Our (my husband and I) entire lives revolved around Haley and taking care of her. We were VERY intuned with her needs, and went as far as God would allow us to take care of her. Haley was the most compliant patient I have ever known, but yet, she was unable to win the battle. The severity level of each patient is so different....the strains of bacteria are very different...every CF patiens body responds differently and you can only pray it will be your child who has the less severe case. We thought we would be the "lucky" one. The one who beat the odds.....that wasn't God's plan. Please take a look at Haley's Caring Bridge site. Read back over the past several months....then you will realize it isn't the parents fault at all.......it is simply this terrible disease. I wish you the best of luck. www.caringbridge.org/visit/haleypalmer
 

angelhaley

New member
Well, as you can see...this is my first post ever to this site. I read your question, and just can't help but feel upset at the first response you had. My daughter Haley, passed away only 5 weeks ago to CF. She was only 12 years old. What I will tell you is this....Our (my husband and I) entire lives revolved around Haley and taking care of her. We were VERY intuned with her needs, and went as far as God would allow us to take care of her. Haley was the most compliant patient I have ever known, but yet, she was unable to win the battle. The severity level of each patient is so different....the strains of bacteria are very different...every CF patiens body responds differently and you can only pray it will be your child who has the less severe case. We thought we would be the "lucky" one. The one who beat the odds.....that wasn't God's plan. Please take a look at Haley's Caring Bridge site. Read back over the past several months....then you will realize it isn't the parents fault at all.......it is simply this terrible disease. I wish you the best of luck. www.caringbridge.org/visit/haleypalmer
 

angelhaley

New member
Well, as you can see...this is my first post ever to this site. I read your question, and just can't help but feel upset at the first response you had. My daughter Haley, passed away only 5 weeks ago to CF. She was only 12 years old. What I will tell you is this....Our (my husband and I) entire lives revolved around Haley and taking care of her. We were VERY intuned with her needs, and went as far as God would allow us to take care of her. Haley was the most compliant patient I have ever known, but yet, she was unable to win the battle. The severity level of each patient is so different....the strains of bacteria are very different...every CF patiens body responds differently and you can only pray it will be your child who has the less severe case. We thought we would be the "lucky" one. The one who beat the odds.....that wasn't God's plan. Please take a look at Haley's Caring Bridge site. Read back over the past several months....then you will realize it isn't the parents fault at all.......it is simply this terrible disease. I wish you the best of luck. www.caringbridge.org/visit/haleypalmer
 

angelhaley

New member
Well, as you can see...this is my first post ever to this site. I read your question, and just can't help but feel upset at the first response you had. My daughter Haley, passed away only 5 weeks ago to CF. She was only 12 years old. What I will tell you is this....Our (my husband and I) entire lives revolved around Haley and taking care of her. We were VERY intuned with her needs, and went as far as God would allow us to take care of her. Haley was the most compliant patient I have ever known, but yet, she was unable to win the battle. The severity level of each patient is so different....the strains of bacteria are very different...every CF patiens body responds differently and you can only pray it will be your child who has the less severe case. We thought we would be the "lucky" one. The one who beat the odds.....that wasn't God's plan. Please take a look at Haley's Caring Bridge site. Read back over the past several months....then you will realize it isn't the parents fault at all.......it is simply this terrible disease. I wish you the best of luck. www.caringbridge.org/visit/haleypalmer
 
W

welshwitch

Guest
i think honestly it is blind luck.

some of us are lucky, some are not.

i don't think it has anything to do w. parenting. lots of incredibly proactive parents, who had kids who I was friends with when I was little, have lost their kids to CF.

some of us CFers have wonderful modifier genes that help us. some do not.

it's just a random roll of the dice.
 
W

welshwitch

Guest
i think honestly it is blind luck.

some of us are lucky, some are not.

i don't think it has anything to do w. parenting. lots of incredibly proactive parents, who had kids who I was friends with when I was little, have lost their kids to CF.

some of us CFers have wonderful modifier genes that help us. some do not.

it's just a random roll of the dice.
 
W

welshwitch

Guest
i think honestly it is blind luck.

some of us are lucky, some are not.

i don't think it has anything to do w. parenting. lots of incredibly proactive parents, who had kids who I was friends with when I was little, have lost their kids to CF.

some of us CFers have wonderful modifier genes that help us. some do not.

it's just a random roll of the dice.
 
W

welshwitch

Guest
i think honestly it is blind luck.

some of us are lucky, some are not.

i don't think it has anything to do w. parenting. lots of incredibly proactive parents, who had kids who I was friends with when I was little, have lost their kids to CF.

some of us CFers have wonderful modifier genes that help us. some do not.

it's just a random roll of the dice.
 
W

welshwitch

Guest
i think honestly it is blind luck.
<br />
<br />some of us are lucky, some are not.
<br />
<br />i don't think it has anything to do w. parenting. lots of incredibly proactive parents, who had kids who I was friends with when I was little, have lost their kids to CF.
<br />
<br />some of us CFers have wonderful modifier genes that help us. some do not.
<br />
<br />it's just a random roll of the dice.
<br />
<br />
 

Fran

New member
I agree that luck has a lot to do with it. My son is 13, has had 3 hospitalisations for chest infections and two bowel operations for meconium ilius and a further obstruction when he was 5. I often think he has much less treatment than lots of kids I read about on this site, but has been in perfect health for the past three years. I'm hoping his good luck lasts for a long time!

Fran, mum to Michael,17 no cf. Tim 15, no cf. Lachy 13 DDF508
 

Fran

New member
I agree that luck has a lot to do with it. My son is 13, has had 3 hospitalisations for chest infections and two bowel operations for meconium ilius and a further obstruction when he was 5. I often think he has much less treatment than lots of kids I read about on this site, but has been in perfect health for the past three years. I'm hoping his good luck lasts for a long time!

Fran, mum to Michael,17 no cf. Tim 15, no cf. Lachy 13 DDF508
 

Fran

New member
I agree that luck has a lot to do with it. My son is 13, has had 3 hospitalisations for chest infections and two bowel operations for meconium ilius and a further obstruction when he was 5. I often think he has much less treatment than lots of kids I read about on this site, but has been in perfect health for the past three years. I'm hoping his good luck lasts for a long time!

Fran, mum to Michael,17 no cf. Tim 15, no cf. Lachy 13 DDF508
 

Fran

New member
I agree that luck has a lot to do with it. My son is 13, has had 3 hospitalisations for chest infections and two bowel operations for meconium ilius and a further obstruction when he was 5. I often think he has much less treatment than lots of kids I read about on this site, but has been in perfect health for the past three years. I'm hoping his good luck lasts for a long time!

Fran, mum to Michael,17 no cf. Tim 15, no cf. Lachy 13 DDF508
 

Fran

New member
I agree that luck has a lot to do with it. My son is 13, has had 3 hospitalisations for chest infections and two bowel operations for meconium ilius and a further obstruction when he was 5. I often think he has much less treatment than lots of kids I read about on this site, but has been in perfect health for the past three years. I'm hoping his good luck lasts for a long time!
<br />
<br />Fran, mum to Michael,17 no cf. Tim 15, no cf. Lachy 13 DDF508
<br />
 

leigh12

New member
i am only 6 and half years into this cf journey with my son, so i don't know what the answer to this question sorry and i am not sure at the end i will know the answer either. i think that it is unfair to say that it is mainly how as parents we deal with their health. i joined this site recently and became aware of haley' story and went and read every single post on her caringbridge site. she may have gotten her wings at a young age,but from what i read her mother was amazing and dedicate to her daughter and her health and they did everything humanly possible for her. The only thing i could add is that if you do all you can to make sure they have a great medical team to help them and that as parents we do what we would for any of our children. love them and care for them to the best of our ability. OF course you have to be educated about cf and ask questions and push sometimes, but i dont know what blakes journey holds yet. i am just glad that i have him and i am willing to do what i have to and more so hopefully i might make it a better one somehow.
 

leigh12

New member
i am only 6 and half years into this cf journey with my son, so i don't know what the answer to this question sorry and i am not sure at the end i will know the answer either. i think that it is unfair to say that it is mainly how as parents we deal with their health. i joined this site recently and became aware of haley' story and went and read every single post on her caringbridge site. she may have gotten her wings at a young age,but from what i read her mother was amazing and dedicate to her daughter and her health and they did everything humanly possible for her. The only thing i could add is that if you do all you can to make sure they have a great medical team to help them and that as parents we do what we would for any of our children. love them and care for them to the best of our ability. OF course you have to be educated about cf and ask questions and push sometimes, but i dont know what blakes journey holds yet. i am just glad that i have him and i am willing to do what i have to and more so hopefully i might make it a better one somehow.
 

leigh12

New member
i am only 6 and half years into this cf journey with my son, so i don't know what the answer to this question sorry and i am not sure at the end i will know the answer either. i think that it is unfair to say that it is mainly how as parents we deal with their health. i joined this site recently and became aware of haley' story and went and read every single post on her caringbridge site. she may have gotten her wings at a young age,but from what i read her mother was amazing and dedicate to her daughter and her health and they did everything humanly possible for her. The only thing i could add is that if you do all you can to make sure they have a great medical team to help them and that as parents we do what we would for any of our children. love them and care for them to the best of our ability. OF course you have to be educated about cf and ask questions and push sometimes, but i dont know what blakes journey holds yet. i am just glad that i have him and i am willing to do what i have to and more so hopefully i might make it a better one somehow.
 

leigh12

New member
i am only 6 and half years into this cf journey with my son, so i don't know what the answer to this question sorry and i am not sure at the end i will know the answer either. i think that it is unfair to say that it is mainly how as parents we deal with their health. i joined this site recently and became aware of haley' story and went and read every single post on her caringbridge site. she may have gotten her wings at a young age,but from what i read her mother was amazing and dedicate to her daughter and her health and they did everything humanly possible for her. The only thing i could add is that if you do all you can to make sure they have a great medical team to help them and that as parents we do what we would for any of our children. love them and care for them to the best of our ability. OF course you have to be educated about cf and ask questions and push sometimes, but i dont know what blakes journey holds yet. i am just glad that i have him and i am willing to do what i have to and more so hopefully i might make it a better one somehow.
 

leigh12

New member
i am only 6 and half years into this cf journey with my son, so i don't know what the answer to this question sorry and i am not sure at the end i will know the answer either. i think that it is unfair to say that it is mainly how as parents we deal with their health. i joined this site recently and became aware of haley' story and went and read every single post on her caringbridge site. she may have gotten her wings at a young age,but from what i read her mother was amazing and dedicate to her daughter and her health and they did everything humanly possible for her. The only thing i could add is that if you do all you can to make sure they have a great medical team to help them and that as parents we do what we would for any of our children. love them and care for them to the best of our ability. OF course you have to be educated about cf and ask questions and push sometimes, but i dont know what blakes journey holds yet. i am just glad that i have him and i am willing to do what i have to and more so hopefully i might make it a better one somehow.
 
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