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Having a hard time...
- Thread starter JenDiS
- Start date
PedsNP2007
New member
Hi,
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
PedsNP2007
New member
Hi,
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
PedsNP2007
New member
Hi,
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
PedsNP2007
New member
Hi,
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
That's just my opinion.
Jenn
30 year old cf
PedsNP2007
New member
Hi,
<br />I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
<br />
<br />So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
<br />
<br />Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
<br />
<br />I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
<br />
<br />Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
<br />
<br />That's just my opinion.
<br />
<br />Jenn
<br />30 year old cf
<br />I'm a 2nd child with CF. My parents unexpectedly had my brother with CF, born premature with a significant bowel obstruction secondary to MI. He spent 2 months in the NICU and went home with troublesome eating issues for a full year of his life. The stress my parents experienced was enormous. Not only were they feeling guilt finding out they caused this disease, but that they were alone with no support whatsoever. I don't think they knew anyone with a CF child and they were told my brother wouldn't make it past 3 years old.
<br />
<br />So, why would they try for another child, knowing the 25% chance of having a CF child? Well, they thought that the chance was low. Needless to say, I was born with MI, though I didn't require surgical treatment. I also did not have the feeding issues that my brother had -- I was a fat happy baby (with enzymes of course!).
<br />
<br />Fast forward 5 years, my sister was born with CF. She was unplanned. My parents didn't plan on having another child due to already having 2 with CF. Oh well, we have to deal with what we have.
<br />
<br />I don't blame my parents. Yes, they knew the risk when they tried for me. Now, given that I haven't gone through as much as others here, maybe my mindset would be different. However, I know my parents wanted me dearly and love me a lot -- they had no idea of future pains for their children.
<br />
<br />Without CF, I am not sure where I'd be today. CF has influenced my life -- I push myself hard to go further in this world -- I am in the PhD program, want a family, etc. I think I would have settled for less if I didn't have CF.
<br />
<br />That's just my opinion.
<br />
<br />Jenn
<br />30 year old cf
Mockingbird
New member
I don't know anything about you or your situation, but I can tell you about how I feel about my parents and maybe that will help.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
Mockingbird
New member
I don't know anything about you or your situation, but I can tell you about how I feel about my parents and maybe that will help.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
Mockingbird
New member
I don't know anything about you or your situation, but I can tell you about how I feel about my parents and maybe that will help.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
Mockingbird
New member
I don't know anything about you or your situation, but I can tell you about how I feel about my parents and maybe that will help.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
Mockingbird
New member
I don't know anything about you or your situation, but I can tell you about how I feel about my parents and maybe that will help.
<br />
<br />When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
<br />
<br />They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
<br />
<br />I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
<br />
<br />Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
<br />
<br />When I was born, my parents were poor collee students living in my grandmother's basement. They didn't know I had CF at first; I was diagnosed at four weeks old. I can't imagine what that must have been like for them; knowing something was wrong with their child but not knowing what, and then waiting for the tests and finding out the test for CF was positive. Their entire life was turned upside down.
<br />
<br />They struggled to pay the bills; stuggled to pay for the medication and doctor visits and medical equipment. They worked so hard to make sure I had what I needed. And they did this for over twenty years, even when I was selfish and ungrateful they loved me unconditionally and provided for me.
<br />
<br />I could go on and on about this, but I guess my point is my parents did so much for me and they never asked for anything in return. When I think about everything they've sacrificed over the years, I can't be anything but grateful.
<br />
<br />Even if my parents did know they were carriers, I could never blame them, because the love they've given me is so much more powerful than cystic fibrosis.
E
emerenta18
Guest
I don't blame my parents, nor am I resentful towards them for having cf, they had no idea what they were passing on, i do however, wish they wouldn't take part of my disability money as rent, that truly annoys me, and does make me think, well you did give me this disease in the first place, but considering all the support they've given me, I can't complain, I would be incredibly resentful if they knew they were carriers, or already had a child with cf
E
emerenta18
Guest
I don't blame my parents, nor am I resentful towards them for having cf, they had no idea what they were passing on, i do however, wish they wouldn't take part of my disability money as rent, that truly annoys me, and does make me think, well you did give me this disease in the first place, but considering all the support they've given me, I can't complain, I would be incredibly resentful if they knew they were carriers, or already had a child with cf
E
emerenta18
Guest
I don't blame my parents, nor am I resentful towards them for having cf, they had no idea what they were passing on, i do however, wish they wouldn't take part of my disability money as rent, that truly annoys me, and does make me think, well you did give me this disease in the first place, but considering all the support they've given me, I can't complain, I would be incredibly resentful if they knew they were carriers, or already had a child with cf
E
emerenta18
Guest
I don't blame my parents, nor am I resentful towards them for having cf, they had no idea what they were passing on, i do however, wish they wouldn't take part of my disability money as rent, that truly annoys me, and does make me think, well you did give me this disease in the first place, but considering all the support they've given me, I can't complain, I would be incredibly resentful if they knew they were carriers, or already had a child with cf
E
emerenta18
Guest
I don't blame my parents, nor am I resentful towards them for having cf, they had no idea what they were passing on, i do however, wish they wouldn't take part of my disability money as rent, that truly annoys me, and does make me think, well you did give me this disease in the first place, but considering all the support they've given me, I can't complain, I would be incredibly resentful if they knew they were carriers, or already had a child with cf