Mommy, why do I have CF?

Mommafirst · Jul 29, 2008

I'm not sure how to approach this, I haven't had to face it yet, but I know the day will come.

I would probably just take the clinical genetic stuff, sorta like...well everyone has hundreds of pieces that make you YOU. Your pieces make your eyes X color and hair X color. Some people have allergies. Some have to wear glasses. Some have legs that don't walk all that well. And some have CF.

Then I'd probably re-focus on all the things that can be done to make living with CF easier.

But this approach might not be for you. You have to go from your heart and what you believe. Since your feelings come from the "its meant to be -- so that you can inspire greatness" then that might be a good way for you to go.

I just am having trouble buying the whole it was meant to be thing. I think that our kids having this disease sucks and its a totally genetic thing. They (and we) did nothing wrong to have this happen. Nor do I believe (and I may be in the minority here) that I did something so right that my daughter was given this for a purpose. I just think it is, and it sucks, but that we can still be inspired and inspiring through the hand we were dealt.

Good luck -- I dont' look forward to this stage, and I know it'll be here before I know it.

Mommafirst · Jul 29, 2008

I'm not sure how to approach this, I haven't had to face it yet, but I know the day will come.

I would probably just take the clinical genetic stuff, sorta like...well everyone has hundreds of pieces that make you YOU. Your pieces make your eyes X color and hair X color. Some people have allergies. Some have to wear glasses. Some have legs that don't walk all that well. And some have CF.

Then I'd probably re-focus on all the things that can be done to make living with CF easier.

But this approach might not be for you. You have to go from your heart and what you believe. Since your feelings come from the "its meant to be -- so that you can inspire greatness" then that might be a good way for you to go.

I just am having trouble buying the whole it was meant to be thing. I think that our kids having this disease sucks and its a totally genetic thing. They (and we) did nothing wrong to have this happen. Nor do I believe (and I may be in the minority here) that I did something so right that my daughter was given this for a purpose. I just think it is, and it sucks, but that we can still be inspired and inspiring through the hand we were dealt.

Good luck -- I dont' look forward to this stage, and I know it'll be here before I know it.

Mommafirst · Jul 29, 2008

I'm not sure how to approach this, I haven't had to face it yet, but I know the day will come.

I would probably just take the clinical genetic stuff, sorta like...well everyone has hundreds of pieces that make you YOU. Your pieces make your eyes X color and hair X color. Some people have allergies. Some have to wear glasses. Some have legs that don't walk all that well. And some have CF.

Then I'd probably re-focus on all the things that can be done to make living with CF easier.

But this approach might not be for you. You have to go from your heart and what you believe. Since your feelings come from the "its meant to be -- so that you can inspire greatness" then that might be a good way for you to go.

I just am having trouble buying the whole it was meant to be thing. I think that our kids having this disease sucks and its a totally genetic thing. They (and we) did nothing wrong to have this happen. Nor do I believe (and I may be in the minority here) that I did something so right that my daughter was given this for a purpose. I just think it is, and it sucks, but that we can still be inspired and inspiring through the hand we were dealt.

Good luck -- I dont' look forward to this stage, and I know it'll be here before I know it.

Mommafirst · Jul 29, 2008

I'm not sure how to approach this, I haven't had to face it yet, but I know the day will come.

I would probably just take the clinical genetic stuff, sorta like...well everyone has hundreds of pieces that make you YOU. Your pieces make your eyes X color and hair X color. Some people have allergies. Some have to wear glasses. Some have legs that don't walk all that well. And some have CF.

Then I'd probably re-focus on all the things that can be done to make living with CF easier.

But this approach might not be for you. You have to go from your heart and what you believe. Since your feelings come from the "its meant to be -- so that you can inspire greatness" then that might be a good way for you to go.

I just am having trouble buying the whole it was meant to be thing. I think that our kids having this disease sucks and its a totally genetic thing. They (and we) did nothing wrong to have this happen. Nor do I believe (and I may be in the minority here) that I did something so right that my daughter was given this for a purpose. I just think it is, and it sucks, but that we can still be inspired and inspiring through the hand we were dealt.

Good luck -- I dont' look forward to this stage, and I know it'll be here before I know it.

Mommafirst · Jul 29, 2008

I'm not sure how to approach this, I haven't had to face it yet, but I know the day will come.
 
 I would probably just take the clinical genetic stuff, sorta like...well everyone has hundreds of pieces that make you YOU. Your pieces make your eyes X color and hair X color. Some people have allergies. Some have to wear glasses. Some have legs that don't walk all that well. And some have CF.
 
 Then I'd probably re-focus on all the things that can be done to make living with CF easier.
 
 But this approach might not be for you. You have to go from your heart and what you believe. Since your feelings come from the "its meant to be -- so that you can inspire greatness" then that might be a good way for you to go.
 
 I just am having trouble buying the whole it was meant to be thing. I think that our kids having this disease sucks and its a totally genetic thing. They (and we) did nothing wrong to have this happen. Nor do I believe (and I may be in the minority here) that I did something so right that my daughter was given this for a purpose. I just think it is, and it sucks, but that we can still be inspired and inspiring through the hand we were dealt.
 
 Good luck -- I dont' look forward to this stage, and I know it'll be here before I know it.

grassisgreener · Jul 29, 2008

When my daughter (5) asks this question we just remind her that everyone is different. She sees the drastic ways people can be different everytime we take her to her CF clinic which is in a large children's hospital. She also knows of other kids that have CF so she knows that she isn't the only one.

When she is older and can understand the science of it, we will explain how it works genetically.

I am sure as she gets older she will be less accepting of our vague answer but it works for now and it is our hope that if we don't make a big issue out of her having CF then it might help keep her from feeling like CF has her.

ETA: I personally wouldn't try to explain to her your thoughts on the purpose of her having CF, in my opinion I think that is something she could/should figure out on her own. My thinking is that each person in this world (CF or not) has puposes and we should all be trying to figure those out and follow through.

Also, I wanted to add that your daughter looks super cute!

grassisgreener · Jul 29, 2008

When my daughter (5) asks this question we just remind her that everyone is different. She sees the drastic ways people can be different everytime we take her to her CF clinic which is in a large children's hospital. She also knows of other kids that have CF so she knows that she isn't the only one.

When she is older and can understand the science of it, we will explain how it works genetically.

I am sure as she gets older she will be less accepting of our vague answer but it works for now and it is our hope that if we don't make a big issue out of her having CF then it might help keep her from feeling like CF has her.

ETA: I personally wouldn't try to explain to her your thoughts on the purpose of her having CF, in my opinion I think that is something she could/should figure out on her own. My thinking is that each person in this world (CF or not) has puposes and we should all be trying to figure those out and follow through.

Also, I wanted to add that your daughter looks super cute!

grassisgreener · Jul 29, 2008

When my daughter (5) asks this question we just remind her that everyone is different. She sees the drastic ways people can be different everytime we take her to her CF clinic which is in a large children's hospital. She also knows of other kids that have CF so she knows that she isn't the only one.

When she is older and can understand the science of it, we will explain how it works genetically.

I am sure as she gets older she will be less accepting of our vague answer but it works for now and it is our hope that if we don't make a big issue out of her having CF then it might help keep her from feeling like CF has her.

ETA: I personally wouldn't try to explain to her your thoughts on the purpose of her having CF, in my opinion I think that is something she could/should figure out on her own. My thinking is that each person in this world (CF or not) has puposes and we should all be trying to figure those out and follow through.

Also, I wanted to add that your daughter looks super cute!

grassisgreener · Jul 29, 2008

When my daughter (5) asks this question we just remind her that everyone is different. She sees the drastic ways people can be different everytime we take her to her CF clinic which is in a large children's hospital. She also knows of other kids that have CF so she knows that she isn't the only one.

When she is older and can understand the science of it, we will explain how it works genetically.

I am sure as she gets older she will be less accepting of our vague answer but it works for now and it is our hope that if we don't make a big issue out of her having CF then it might help keep her from feeling like CF has her.

ETA: I personally wouldn't try to explain to her your thoughts on the purpose of her having CF, in my opinion I think that is something she could/should figure out on her own. My thinking is that each person in this world (CF or not) has puposes and we should all be trying to figure those out and follow through.

Also, I wanted to add that your daughter looks super cute!

grassisgreener · Jul 29, 2008

When my daughter (5) asks this question we just remind her that everyone is different. She sees the drastic ways people can be different everytime we take her to her CF clinic which is in a large children's hospital. She also knows of other kids that have CF so she knows that she isn't the only one.
 
 When she is older and can understand the science of it, we will explain how it works genetically.
 
 I am sure as she gets older she will be less accepting of our vague answer but it works for now and it is our hope that if we don't make a big issue out of her having CF then it might help keep her from feeling like CF has her.
 
 ETA: I personally wouldn't try to explain to her your thoughts on the purpose of her having CF, in my opinion I think that is something she could/should figure out on her own. My thinking is that each person in this world (CF or not) has puposes and we should all be trying to figure those out and follow through.
 
 Also, I wanted to add that your daughter looks super cute!

Abby · Jul 29, 2008

Thanks for your replies. We have talked to her about everybody having their own "thing" and hers is cf. It was easier for her to see that when she went to kindergarten last year and she was one of 4 in her class with "special needs". One child has Celiac, one has Diabetes and the other has Stage IV Neuroblastoma. So she knows other kids have issues too. It's just that she stressed the fact that it's her with cf and why was she made with it. She's looking for the deep, spiritual explanation not the easy to answer genetics.

In perspective, this is probably one of the easier questions. I don't look forward to the tougher questions that I know will come.

Welshwitch, thanks for the link. I think we'll look at it tonight.

Abby · Jul 29, 2008

Thanks for your replies. We have talked to her about everybody having their own "thing" and hers is cf. It was easier for her to see that when she went to kindergarten last year and she was one of 4 in her class with "special needs". One child has Celiac, one has Diabetes and the other has Stage IV Neuroblastoma. So she knows other kids have issues too. It's just that she stressed the fact that it's her with cf and why was she made with it. She's looking for the deep, spiritual explanation not the easy to answer genetics.

In perspective, this is probably one of the easier questions. I don't look forward to the tougher questions that I know will come.

Welshwitch, thanks for the link. I think we'll look at it tonight.

Abby · Jul 29, 2008

Thanks for your replies. We have talked to her about everybody having their own "thing" and hers is cf. It was easier for her to see that when she went to kindergarten last year and she was one of 4 in her class with "special needs". One child has Celiac, one has Diabetes and the other has Stage IV Neuroblastoma. So she knows other kids have issues too. It's just that she stressed the fact that it's her with cf and why was she made with it. She's looking for the deep, spiritual explanation not the easy to answer genetics.

In perspective, this is probably one of the easier questions. I don't look forward to the tougher questions that I know will come.

Welshwitch, thanks for the link. I think we'll look at it tonight.

Abby · Jul 29, 2008

Thanks for your replies. We have talked to her about everybody having their own "thing" and hers is cf. It was easier for her to see that when she went to kindergarten last year and she was one of 4 in her class with "special needs". One child has Celiac, one has Diabetes and the other has Stage IV Neuroblastoma. So she knows other kids have issues too. It's just that she stressed the fact that it's her with cf and why was she made with it. She's looking for the deep, spiritual explanation not the easy to answer genetics.

In perspective, this is probably one of the easier questions. I don't look forward to the tougher questions that I know will come.

Welshwitch, thanks for the link. I think we'll look at it tonight.

Abby · Jul 29, 2008

Thanks for your replies. We have talked to her about everybody having their own "thing" and hers is cf. It was easier for her to see that when she went to kindergarten last year and she was one of 4 in her class with "special needs". One child has Celiac, one has Diabetes and the other has Stage IV Neuroblastoma. So she knows other kids have issues too. It's just that she stressed the fact that it's her with cf and why was she made with it. She's looking for the deep, spiritual explanation not the easy to answer genetics.
 
 In perspective, this is probably one of the easier questions. I don't look forward to the tougher questions that I know will come.
 
 Welshwitch, thanks for the link. I think we'll look at it tonight.

MicheleGazelle · Jul 29, 2008

I am never sure I should I reply to questions like this one. I have two sons who both have multiple handicaps and they are both very happy with their lives and have learned to be productive in spite of their many limitations. So, on the one hand, I feel like I did a lot of things right and I hope that my thoughts will help other parents with children who have difficulties. On the other hand, my son with CF has not been on antibiotics in over 10 years. So I feel bad trying to say something that might sound a little like "don't worry, be happy" to folks who are probably still suffering a lot a more than he is.

But here is some of what has worked for us:
My sons have been raised with the idea that all of thier traits are a two-edged sword and you can't have the "good" stuff without having the "bad" stuff. They are both ASD (autism spectrum disorder), so they struggle with social skills. On the other hand, like a lot of aspie-ish types, the way their mind works makes them better at some things. For example, you typically see a lot of aspie-ish traits in IT people and that's a fairly well-paid field. With my oldest, who is both ASD and also has CF, having CF means I have spent a lot of time taking care of him and we therefore have a much closer relationship than I have with my younger son. This has helped him a lot with the social skills that he sucks at because he is more severely ASD than his brother. On the other hand, I learned a LOT about treating gut problems from an ASD list. So in a way, the fact that he is ASD has helped us address his CF-related health issues. Also, my kids don't want a "normal" life. I have long told them they would have to create a life for themselves that worked well because they weren't going to be able to live like other people and make that work. So to them having all these issues sort of excuses them from trying to be "normal" and they like that. <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for spiritual reasons, I don't think my son has CF as punishment or something like that. I think physical/real world problems give a person a means to get a handle on psychological/spiritual problems. So I see these real world problems as an opportunity to do something we couldn't otherwise do. Don't get me wrong, I spend plenty of time ticked off and railing about how "god hates me". But I am still suffering a lot more than my son is. I had to nearly die to get diagnosed. When he and I were both diagnosed, he had not been on antibiotics in over 3 years whereas I had just spent 3 1/2 months bedridden and at death's door. Getting well after that has been a very long haul. My hope is that what I have learned along the way will help others with CF live healthier lives and someday CF will be seen as something that means you have to eat different and live different but not necessarily be sick all the time.

Peace and good luck with this.

MicheleGazelle · Jul 29, 2008

I am never sure I should I reply to questions like this one. I have two sons who both have multiple handicaps and they are both very happy with their lives and have learned to be productive in spite of their many limitations. So, on the one hand, I feel like I did a lot of things right and I hope that my thoughts will help other parents with children who have difficulties. On the other hand, my son with CF has not been on antibiotics in over 10 years. So I feel bad trying to say something that might sound a little like "don't worry, be happy" to folks who are probably still suffering a lot a more than he is.

But here is some of what has worked for us:
My sons have been raised with the idea that all of thier traits are a two-edged sword and you can't have the "good" stuff without having the "bad" stuff. They are both ASD (autism spectrum disorder), so they struggle with social skills. On the other hand, like a lot of aspie-ish types, the way their mind works makes them better at some things. For example, you typically see a lot of aspie-ish traits in IT people and that's a fairly well-paid field. With my oldest, who is both ASD and also has CF, having CF means I have spent a lot of time taking care of him and we therefore have a much closer relationship than I have with my younger son. This has helped him a lot with the social skills that he sucks at because he is more severely ASD than his brother. On the other hand, I learned a LOT about treating gut problems from an ASD list. So in a way, the fact that he is ASD has helped us address his CF-related health issues. Also, my kids don't want a "normal" life. I have long told them they would have to create a life for themselves that worked well because they weren't going to be able to live like other people and make that work. So to them having all these issues sort of excuses them from trying to be "normal" and they like that. <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for spiritual reasons, I don't think my son has CF as punishment or something like that. I think physical/real world problems give a person a means to get a handle on psychological/spiritual problems. So I see these real world problems as an opportunity to do something we couldn't otherwise do. Don't get me wrong, I spend plenty of time ticked off and railing about how "god hates me". But I am still suffering a lot more than my son is. I had to nearly die to get diagnosed. When he and I were both diagnosed, he had not been on antibiotics in over 3 years whereas I had just spent 3 1/2 months bedridden and at death's door. Getting well after that has been a very long haul. My hope is that what I have learned along the way will help others with CF live healthier lives and someday CF will be seen as something that means you have to eat different and live different but not necessarily be sick all the time.

Peace and good luck with this.

MicheleGazelle · Jul 29, 2008

I am never sure I should I reply to questions like this one. I have two sons who both have multiple handicaps and they are both very happy with their lives and have learned to be productive in spite of their many limitations. So, on the one hand, I feel like I did a lot of things right and I hope that my thoughts will help other parents with children who have difficulties. On the other hand, my son with CF has not been on antibiotics in over 10 years. So I feel bad trying to say something that might sound a little like "don't worry, be happy" to folks who are probably still suffering a lot a more than he is.

But here is some of what has worked for us:
My sons have been raised with the idea that all of thier traits are a two-edged sword and you can't have the "good" stuff without having the "bad" stuff. They are both ASD (autism spectrum disorder), so they struggle with social skills. On the other hand, like a lot of aspie-ish types, the way their mind works makes them better at some things. For example, you typically see a lot of aspie-ish traits in IT people and that's a fairly well-paid field. With my oldest, who is both ASD and also has CF, having CF means I have spent a lot of time taking care of him and we therefore have a much closer relationship than I have with my younger son. This has helped him a lot with the social skills that he sucks at because he is more severely ASD than his brother. On the other hand, I learned a LOT about treating gut problems from an ASD list. So in a way, the fact that he is ASD has helped us address his CF-related health issues. Also, my kids don't want a "normal" life. I have long told them they would have to create a life for themselves that worked well because they weren't going to be able to live like other people and make that work. So to them having all these issues sort of excuses them from trying to be "normal" and they like that. <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for spiritual reasons, I don't think my son has CF as punishment or something like that. I think physical/real world problems give a person a means to get a handle on psychological/spiritual problems. So I see these real world problems as an opportunity to do something we couldn't otherwise do. Don't get me wrong, I spend plenty of time ticked off and railing about how "god hates me". But I am still suffering a lot more than my son is. I had to nearly die to get diagnosed. When he and I were both diagnosed, he had not been on antibiotics in over 3 years whereas I had just spent 3 1/2 months bedridden and at death's door. Getting well after that has been a very long haul. My hope is that what I have learned along the way will help others with CF live healthier lives and someday CF will be seen as something that means you have to eat different and live different but not necessarily be sick all the time.

Peace and good luck with this.

MicheleGazelle · Jul 29, 2008

I am never sure I should I reply to questions like this one. I have two sons who both have multiple handicaps and they are both very happy with their lives and have learned to be productive in spite of their many limitations. So, on the one hand, I feel like I did a lot of things right and I hope that my thoughts will help other parents with children who have difficulties. On the other hand, my son with CF has not been on antibiotics in over 10 years. So I feel bad trying to say something that might sound a little like "don't worry, be happy" to folks who are probably still suffering a lot a more than he is.

But here is some of what has worked for us:
My sons have been raised with the idea that all of thier traits are a two-edged sword and you can't have the "good" stuff without having the "bad" stuff. They are both ASD (autism spectrum disorder), so they struggle with social skills. On the other hand, like a lot of aspie-ish types, the way their mind works makes them better at some things. For example, you typically see a lot of aspie-ish traits in IT people and that's a fairly well-paid field. With my oldest, who is both ASD and also has CF, having CF means I have spent a lot of time taking care of him and we therefore have a much closer relationship than I have with my younger son. This has helped him a lot with the social skills that he sucks at because he is more severely ASD than his brother. On the other hand, I learned a LOT about treating gut problems from an ASD list. So in a way, the fact that he is ASD has helped us address his CF-related health issues. Also, my kids don't want a "normal" life. I have long told them they would have to create a life for themselves that worked well because they weren't going to be able to live like other people and make that work. So to them having all these issues sort of excuses them from trying to be "normal" and they like that. <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for spiritual reasons, I don't think my son has CF as punishment or something like that. I think physical/real world problems give a person a means to get a handle on psychological/spiritual problems. So I see these real world problems as an opportunity to do something we couldn't otherwise do. Don't get me wrong, I spend plenty of time ticked off and railing about how "god hates me". But I am still suffering a lot more than my son is. I had to nearly die to get diagnosed. When he and I were both diagnosed, he had not been on antibiotics in over 3 years whereas I had just spent 3 1/2 months bedridden and at death's door. Getting well after that has been a very long haul. My hope is that what I have learned along the way will help others with CF live healthier lives and someday CF will be seen as something that means you have to eat different and live different but not necessarily be sick all the time.

Peace and good luck with this.

MicheleGazelle · Jul 29, 2008

I am never sure I should I reply to questions like this one. I have two sons who both have multiple handicaps and they are both very happy with their lives and have learned to be productive in spite of their many limitations. So, on the one hand, I feel like I did a lot of things right and I hope that my thoughts will help other parents with children who have difficulties. On the other hand, my son with CF has not been on antibiotics in over 10 years. So I feel bad trying to say something that might sound a little like "don't worry, be happy" to folks who are probably still suffering a lot a more than he is.
 
 But here is some of what has worked for us:
 My sons have been raised with the idea that all of thier traits are a two-edged sword and you can't have the "good" stuff without having the "bad" stuff. They are both ASD (autism spectrum disorder), so they struggle with social skills. On the other hand, like a lot of aspie-ish types, the way their mind works makes them better at some things. For example, you typically see a lot of aspie-ish traits in IT people and that's a fairly well-paid field. With my oldest, who is both ASD and also has CF, having CF means I have spent a lot of time taking care of him and we therefore have a much closer relationship than I have with my younger son. This has helped him a lot with the social skills that he sucks at because he is more severely ASD than his brother. On the other hand, I learned a LOT about treating gut problems from an ASD list. So in a way, the fact that he is ASD has helped us address his CF-related health issues. Also, my kids don't want a "normal" life. I have long told them they would have to create a life for themselves that worked well because they weren't going to be able to live like other people and make that work. So to them having all these issues sort of excuses them from trying to be "normal" and they like that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 As for spiritual reasons, I don't think my son has CF as punishment or something like that. I think physical/real world problems give a person a means to get a handle on psychological/spiritual problems. So I see these real world problems as an opportunity to do something we couldn't otherwise do. Don't get me wrong, I spend plenty of time ticked off and railing about how "god hates me". But I am still suffering a lot more than my son is. I had to nearly die to get diagnosed. When he and I were both diagnosed, he had not been on antibiotics in over 3 years whereas I had just spent 3 1/2 months bedridden and at death's door. Getting well after that has been a very long haul. My hope is that what I have learned along the way will help others with CF live healthier lives and someday CF will be seen as something that means you have to eat different and live different but not necessarily be sick all the time.
 
 Peace and good luck with this.

Mommy, why do I have CF?

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