Kids born to parents with CF

fr3ak · May 2, 2008

Bare with me!!

NO offense is intended here and I hope that the comments stay civil!

I know there have been several posts lately about having kids or not having kids, but to my knowledge this question hasn't been asked.

I personally am divided over the subject of having kids...

From a young age I was against ever having kids because for me I didn't want the child to carry the responsibility or burden of feeling they may have contributed to killing their mother. I also found it difficult to justify being selfish, knowing that I would make my child motherless one day...Not to mention knowing I would never see them graduate, get married, have kids etc

I think we all (or most) want to leave behind something of ourselves, CF's being no exception.

That said, I also would love to have kids, my health now post tx although not 100% predictable is stable and I am healthy etc etc, although the chance of that happening is dim due to the difficulties in making it happen (I don't have a uterus now, which is a whole other story)

*note* I am NOT implying any one selfish for having kids

A few years ago when I was spending most my time in hospital before my transplant I got to know this woman and her then 10 year old girl really well

When her mum was sick the girl resented her for being sick and her having to spend time at the hospital as well as being very angry (and made it obvious to everyone around), which is understandable, but she did make her mother feel pretty bad with comments and her general reaction to her deterioration in health and having her. I know every kid at one point in their life says extremely hurtful things to their parents, like wishing they had never been born etc etc

But this situation was I suppose predictable (as we know the outcomes)

The mother has since passed away and I often still think of the turmoil faced by the chid and wonder what ever happened to her...

So my question is not so much to the adults themselves but to your kids (providing they are old enough to comprehend)

What is their take on your CF

How do they cope when you are sick?

How do you help alleviate their fears?

fr3ak · May 2, 2008

Bare with me!!

NO offense is intended here and I hope that the comments stay civil!

I know there have been several posts lately about having kids or not having kids, but to my knowledge this question hasn't been asked.

I personally am divided over the subject of having kids...

From a young age I was against ever having kids because for me I didn't want the child to carry the responsibility or burden of feeling they may have contributed to killing their mother. I also found it difficult to justify being selfish, knowing that I would make my child motherless one day...Not to mention knowing I would never see them graduate, get married, have kids etc

I think we all (or most) want to leave behind something of ourselves, CF's being no exception.

That said, I also would love to have kids, my health now post tx although not 100% predictable is stable and I am healthy etc etc, although the chance of that happening is dim due to the difficulties in making it happen (I don't have a uterus now, which is a whole other story)

*note* I am NOT implying any one selfish for having kids

A few years ago when I was spending most my time in hospital before my transplant I got to know this woman and her then 10 year old girl really well

When her mum was sick the girl resented her for being sick and her having to spend time at the hospital as well as being very angry (and made it obvious to everyone around), which is understandable, but she did make her mother feel pretty bad with comments and her general reaction to her deterioration in health and having her. I know every kid at one point in their life says extremely hurtful things to their parents, like wishing they had never been born etc etc

But this situation was I suppose predictable (as we know the outcomes)

The mother has since passed away and I often still think of the turmoil faced by the chid and wonder what ever happened to her...

So my question is not so much to the adults themselves but to your kids (providing they are old enough to comprehend)

What is their take on your CF

How do they cope when you are sick?

How do you help alleviate their fears?

fr3ak · May 2, 2008

Bare with me!!

NO offense is intended here and I hope that the comments stay civil!

I know there have been several posts lately about having kids or not having kids, but to my knowledge this question hasn't been asked.

I personally am divided over the subject of having kids...

From a young age I was against ever having kids because for me I didn't want the child to carry the responsibility or burden of feeling they may have contributed to killing their mother. I also found it difficult to justify being selfish, knowing that I would make my child motherless one day...Not to mention knowing I would never see them graduate, get married, have kids etc

I think we all (or most) want to leave behind something of ourselves, CF's being no exception.

That said, I also would love to have kids, my health now post tx although not 100% predictable is stable and I am healthy etc etc, although the chance of that happening is dim due to the difficulties in making it happen (I don't have a uterus now, which is a whole other story)

*note* I am NOT implying any one selfish for having kids

A few years ago when I was spending most my time in hospital before my transplant I got to know this woman and her then 10 year old girl really well

When her mum was sick the girl resented her for being sick and her having to spend time at the hospital as well as being very angry (and made it obvious to everyone around), which is understandable, but she did make her mother feel pretty bad with comments and her general reaction to her deterioration in health and having her. I know every kid at one point in their life says extremely hurtful things to their parents, like wishing they had never been born etc etc

But this situation was I suppose predictable (as we know the outcomes)

The mother has since passed away and I often still think of the turmoil faced by the chid and wonder what ever happened to her...

So my question is not so much to the adults themselves but to your kids (providing they are old enough to comprehend)

What is their take on your CF

How do they cope when you are sick?

How do you help alleviate their fears?

fr3ak · May 2, 2008

Bare with me!!

NO offense is intended here and I hope that the comments stay civil!

I know there have been several posts lately about having kids or not having kids, but to my knowledge this question hasn't been asked.

I personally am divided over the subject of having kids...

From a young age I was against ever having kids because for me I didn't want the child to carry the responsibility or burden of feeling they may have contributed to killing their mother. I also found it difficult to justify being selfish, knowing that I would make my child motherless one day...Not to mention knowing I would never see them graduate, get married, have kids etc

I think we all (or most) want to leave behind something of ourselves, CF's being no exception.

That said, I also would love to have kids, my health now post tx although not 100% predictable is stable and I am healthy etc etc, although the chance of that happening is dim due to the difficulties in making it happen (I don't have a uterus now, which is a whole other story)

*note* I am NOT implying any one selfish for having kids

A few years ago when I was spending most my time in hospital before my transplant I got to know this woman and her then 10 year old girl really well

When her mum was sick the girl resented her for being sick and her having to spend time at the hospital as well as being very angry (and made it obvious to everyone around), which is understandable, but she did make her mother feel pretty bad with comments and her general reaction to her deterioration in health and having her. I know every kid at one point in their life says extremely hurtful things to their parents, like wishing they had never been born etc etc

But this situation was I suppose predictable (as we know the outcomes)

The mother has since passed away and I often still think of the turmoil faced by the chid and wonder what ever happened to her...

So my question is not so much to the adults themselves but to your kids (providing they are old enough to comprehend)

What is their take on your CF

How do they cope when you are sick?

How do you help alleviate their fears?

fr3ak · May 2, 2008

Bare with me!!
 
 NO offense is intended here and I hope that the comments stay civil!
 
 I know there have been several posts lately about having kids or not having kids, but to my knowledge this question hasn't been asked.
 
 I personally am divided over the subject of having kids...
 
 From a young age I was against ever having kids because for me I didn't want the child to carry the responsibility or burden of feeling they may have contributed to killing their mother. I also found it difficult to justify being selfish, knowing that I would make my child motherless one day...Not to mention knowing I would never see them graduate, get married, have kids etc
 
 I think we all (or most) want to leave behind something of ourselves, CF's being no exception.
 
 That said, I also would love to have kids, my health now post tx although not 100% predictable is stable and I am healthy etc etc, although the chance of that happening is dim due to the difficulties in making it happen (I don't have a uterus now, which is a whole other story)
 
 *note* I am NOT implying any one selfish for having kids
 
 A few years ago when I was spending most my time in hospital before my transplant I got to know this woman and her then 10 year old girl really well
 
 When her mum was sick the girl resented her for being sick and her having to spend time at the hospital as well as being very angry (and made it obvious to everyone around), which is understandable, but she did make her mother feel pretty bad with comments and her general reaction to her deterioration in health and having her. I know every kid at one point in their life says extremely hurtful things to their parents, like wishing they had never been born etc etc
 
 But this situation was I suppose predictable (as we know the outcomes)
 
 The mother has since passed away and I often still think of the turmoil faced by the chid and wonder what ever happened to her...
 
 So my question is not so much to the adults themselves but to your kids (providing they are old enough to comprehend)
 
 What is their take on your CF
 
 How do they cope when you are sick?
 
 How do you help alleviate their fears?

TonyaH · May 2, 2008

Hey there,

I usually come to the board to speak as a parent of my 10 year old son with CF. However, I have only mentioned a couple of times on this board that my mother also had CF. Actually, it was undiagnosed CF. She passed away two days before Andrew was born. Andrew was diagnosed at 2 months, and after that I spoke with my mom's pulmo who realized we had trusted the negative sweat test a little too much. She was daignosed with bronchiectasis and aspergillosis, and often treated and responded to CF meds. At that time, doctors were not questioning negative sweat tests unless they were at research hospitals, which my mom was not. So, when my mom's pulmonologist heard Andrew's diagnosis, he agreed she did have CF.

Anyway, to make an already long story longer, I grew up with a "mom with lung disease"..in the hospital three to four times a year, visiting nurses and iv poles all over our house, my brother, sister, father and I took turns doing her CPT (percussion, back then).

Life was hard and emotional,...I grew up a lot faster than I would have wanted to. Being the oldest of three kids, I felt it was my job to play mom when my mom was sick.

We were lucky. We had my mom until she was 45. She saw all three of us graduate. She saw me get married., And came within 2 days of seeing a grandchild. AND I STILL MISS HER SO MUCH IT HURTS EVERY SINGLE DAY.

But I would not turn back and live a different life over again for a million dollars. My childhood made me who I am today. I do not resent my mother. I am not angry. CF happens. It happened to my mom, and it has happened to my son. And all I can do to gain some kind of control of things is learn and make the best caregiver decisions I can. I cannot imagine my life any differently. I will say that today and I would have said that when I was 13 years old. Sure, I had a ton of pressure on me, but CF was not about me. My mom's CF was about her and forced me to be a little less self-absorbed. I never asked for the $80 jeans or the $1000 spring break trip, and I turned down a scholarship away from home to attend a small college that would allow me to be near her. And I thank God I did, because I was able to spend her last years with her.

Kids of sick parents will make sacrifices. Those deciding to have a child will just have to accept that. Their childhood will not be normal. But, that does not mean it cannot be happy. I'm sure you've heard, "Home is where the Heart is".. My home was with my mom. She was and still is my best friend, my source for unconditional love, and my hero. CF did not change that.

TonyaH · May 2, 2008

Hey there,

I usually come to the board to speak as a parent of my 10 year old son with CF. However, I have only mentioned a couple of times on this board that my mother also had CF. Actually, it was undiagnosed CF. She passed away two days before Andrew was born. Andrew was diagnosed at 2 months, and after that I spoke with my mom's pulmo who realized we had trusted the negative sweat test a little too much. She was daignosed with bronchiectasis and aspergillosis, and often treated and responded to CF meds. At that time, doctors were not questioning negative sweat tests unless they were at research hospitals, which my mom was not. So, when my mom's pulmonologist heard Andrew's diagnosis, he agreed she did have CF.

Anyway, to make an already long story longer, I grew up with a "mom with lung disease"..in the hospital three to four times a year, visiting nurses and iv poles all over our house, my brother, sister, father and I took turns doing her CPT (percussion, back then).

Life was hard and emotional,...I grew up a lot faster than I would have wanted to. Being the oldest of three kids, I felt it was my job to play mom when my mom was sick.

We were lucky. We had my mom until she was 45. She saw all three of us graduate. She saw me get married., And came within 2 days of seeing a grandchild. AND I STILL MISS HER SO MUCH IT HURTS EVERY SINGLE DAY.

But I would not turn back and live a different life over again for a million dollars. My childhood made me who I am today. I do not resent my mother. I am not angry. CF happens. It happened to my mom, and it has happened to my son. And all I can do to gain some kind of control of things is learn and make the best caregiver decisions I can. I cannot imagine my life any differently. I will say that today and I would have said that when I was 13 years old. Sure, I had a ton of pressure on me, but CF was not about me. My mom's CF was about her and forced me to be a little less self-absorbed. I never asked for the $80 jeans or the $1000 spring break trip, and I turned down a scholarship away from home to attend a small college that would allow me to be near her. And I thank God I did, because I was able to spend her last years with her.

Kids of sick parents will make sacrifices. Those deciding to have a child will just have to accept that. Their childhood will not be normal. But, that does not mean it cannot be happy. I'm sure you've heard, "Home is where the Heart is".. My home was with my mom. She was and still is my best friend, my source for unconditional love, and my hero. CF did not change that.

TonyaH · May 2, 2008

Hey there,

I usually come to the board to speak as a parent of my 10 year old son with CF. However, I have only mentioned a couple of times on this board that my mother also had CF. Actually, it was undiagnosed CF. She passed away two days before Andrew was born. Andrew was diagnosed at 2 months, and after that I spoke with my mom's pulmo who realized we had trusted the negative sweat test a little too much. She was daignosed with bronchiectasis and aspergillosis, and often treated and responded to CF meds. At that time, doctors were not questioning negative sweat tests unless they were at research hospitals, which my mom was not. So, when my mom's pulmonologist heard Andrew's diagnosis, he agreed she did have CF.

Anyway, to make an already long story longer, I grew up with a "mom with lung disease"..in the hospital three to four times a year, visiting nurses and iv poles all over our house, my brother, sister, father and I took turns doing her CPT (percussion, back then).

Life was hard and emotional,...I grew up a lot faster than I would have wanted to. Being the oldest of three kids, I felt it was my job to play mom when my mom was sick.

We were lucky. We had my mom until she was 45. She saw all three of us graduate. She saw me get married., And came within 2 days of seeing a grandchild. AND I STILL MISS HER SO MUCH IT HURTS EVERY SINGLE DAY.

But I would not turn back and live a different life over again for a million dollars. My childhood made me who I am today. I do not resent my mother. I am not angry. CF happens. It happened to my mom, and it has happened to my son. And all I can do to gain some kind of control of things is learn and make the best caregiver decisions I can. I cannot imagine my life any differently. I will say that today and I would have said that when I was 13 years old. Sure, I had a ton of pressure on me, but CF was not about me. My mom's CF was about her and forced me to be a little less self-absorbed. I never asked for the $80 jeans or the $1000 spring break trip, and I turned down a scholarship away from home to attend a small college that would allow me to be near her. And I thank God I did, because I was able to spend her last years with her.

Kids of sick parents will make sacrifices. Those deciding to have a child will just have to accept that. Their childhood will not be normal. But, that does not mean it cannot be happy. I'm sure you've heard, "Home is where the Heart is".. My home was with my mom. She was and still is my best friend, my source for unconditional love, and my hero. CF did not change that.

TonyaH · May 2, 2008

Hey there,

I usually come to the board to speak as a parent of my 10 year old son with CF. However, I have only mentioned a couple of times on this board that my mother also had CF. Actually, it was undiagnosed CF. She passed away two days before Andrew was born. Andrew was diagnosed at 2 months, and after that I spoke with my mom's pulmo who realized we had trusted the negative sweat test a little too much. She was daignosed with bronchiectasis and aspergillosis, and often treated and responded to CF meds. At that time, doctors were not questioning negative sweat tests unless they were at research hospitals, which my mom was not. So, when my mom's pulmonologist heard Andrew's diagnosis, he agreed she did have CF.

Anyway, to make an already long story longer, I grew up with a "mom with lung disease"..in the hospital three to four times a year, visiting nurses and iv poles all over our house, my brother, sister, father and I took turns doing her CPT (percussion, back then).

Life was hard and emotional,...I grew up a lot faster than I would have wanted to. Being the oldest of three kids, I felt it was my job to play mom when my mom was sick.

We were lucky. We had my mom until she was 45. She saw all three of us graduate. She saw me get married., And came within 2 days of seeing a grandchild. AND I STILL MISS HER SO MUCH IT HURTS EVERY SINGLE DAY.

But I would not turn back and live a different life over again for a million dollars. My childhood made me who I am today. I do not resent my mother. I am not angry. CF happens. It happened to my mom, and it has happened to my son. And all I can do to gain some kind of control of things is learn and make the best caregiver decisions I can. I cannot imagine my life any differently. I will say that today and I would have said that when I was 13 years old. Sure, I had a ton of pressure on me, but CF was not about me. My mom's CF was about her and forced me to be a little less self-absorbed. I never asked for the $80 jeans or the $1000 spring break trip, and I turned down a scholarship away from home to attend a small college that would allow me to be near her. And I thank God I did, because I was able to spend her last years with her.

Kids of sick parents will make sacrifices. Those deciding to have a child will just have to accept that. Their childhood will not be normal. But, that does not mean it cannot be happy. I'm sure you've heard, "Home is where the Heart is".. My home was with my mom. She was and still is my best friend, my source for unconditional love, and my hero. CF did not change that.

TonyaH · May 2, 2008

Hey there,
 
 I usually come to the board to speak as a parent of my 10 year old son with CF. However, I have only mentioned a couple of times on this board that my mother also had CF. Actually, it was undiagnosed CF. She passed away two days before Andrew was born. Andrew was diagnosed at 2 months, and after that I spoke with my mom's pulmo who realized we had trusted the negative sweat test a little too much. She was daignosed with bronchiectasis and aspergillosis, and often treated and responded to CF meds. At that time, doctors were not questioning negative sweat tests unless they were at research hospitals, which my mom was not. So, when my mom's pulmonologist heard Andrew's diagnosis, he agreed she did have CF.
 
 Anyway, to make an already long story longer, I grew up with a "mom with lung disease"..in the hospital three to four times a year, visiting nurses and iv poles all over our house, my brother, sister, father and I took turns doing her CPT (percussion, back then).
 
 Life was hard and emotional,...I grew up a lot faster than I would have wanted to. Being the oldest of three kids, I felt it was my job to play mom when my mom was sick.
 
 We were lucky. We had my mom until she was 45. She saw all three of us graduate. She saw me get married., And came within 2 days of seeing a grandchild. AND I STILL MISS HER SO MUCH IT HURTS EVERY SINGLE DAY.
 
 But I would not turn back and live a different life over again for a million dollars. My childhood made me who I am today. I do not resent my mother. I am not angry. CF happens. It happened to my mom, and it has happened to my son. And all I can do to gain some kind of control of things is learn and make the best caregiver decisions I can. I cannot imagine my life any differently. I will say that today and I would have said that when I was 13 years old. Sure, I had a ton of pressure on me, but CF was not about me. My mom's CF was about her and forced me to be a little less self-absorbed. I never asked for the $80 jeans or the $1000 spring break trip, and I turned down a scholarship away from home to attend a small college that would allow me to be near her. And I thank God I did, because I was able to spend her last years with her.
 
 Kids of sick parents will make sacrifices. Those deciding to have a child will just have to accept that. Their childhood will not be normal. But, that does not mean it cannot be happy. I'm sure you've heard, "Home is where the Heart is".. My home was with my mom. She was and still is my best friend, my source for unconditional love, and my hero. CF did not change that.

fr3ak · May 2, 2008

Tonya,

Thank you for your amazing story!

I know not every child resents being born with a sick parent just as not every child born with an illness resents being ill... (yet it happens)

I suppose it's how we are raised and how we learn to cope and handle things... Some grow up to be very bitter while others embrace the tough with a sense of molding to who we are and have become!

fr3ak · May 2, 2008

Tonya,

Thank you for your amazing story!

I know not every child resents being born with a sick parent just as not every child born with an illness resents being ill... (yet it happens)

I suppose it's how we are raised and how we learn to cope and handle things... Some grow up to be very bitter while others embrace the tough with a sense of molding to who we are and have become!

fr3ak · May 2, 2008

Tonya,

Thank you for your amazing story!

I know not every child resents being born with a sick parent just as not every child born with an illness resents being ill... (yet it happens)

I suppose it's how we are raised and how we learn to cope and handle things... Some grow up to be very bitter while others embrace the tough with a sense of molding to who we are and have become!

fr3ak · May 2, 2008

Tonya,

Thank you for your amazing story!

I know not every child resents being born with a sick parent just as not every child born with an illness resents being ill... (yet it happens)

I suppose it's how we are raised and how we learn to cope and handle things... Some grow up to be very bitter while others embrace the tough with a sense of molding to who we are and have become!

fr3ak · May 2, 2008

Tonya,
 
 Thank you for your amazing story!
 
 I know not every child resents being born with a sick parent just as not every child born with an illness resents being ill... (yet it happens)
 
 I suppose it's how we are raised and how we learn to cope and handle things... Some grow up to be very bitter while others embrace the tough with a sense of molding to who we are and have become!

fondreflections · May 2, 2008