CF and Siblings

Jbenjamin152 · Dec 13, 2009

My parents have 8 children...I fall as number 2, my parents aren't good at raising children. Instead of being there helping us by raising us...after the first 4 of 8 children were born and got to the age when the oldest was 11 and I was 9 then decided they could start having other children and instead of having to raise them there 4 other children can raise them....my older brother left home at 16 and I left at 17, 3 years after he did...I was stuck raising 4 children, washing them, feeding them and the whole family, then to find out that number 7 child is a cf patient also and I have pa's like crazy...we were in the hospital together and I was in charge of taking care of her even when I could barely take care of myself. Well upon one of those such joint hospitalizations my sister got b-cepecia at 2 years old, by then my mother had had another child and my burdens had increased again. Not trying to complain too much but letting you all know that some big families are no walk in the park. From the time my sister was diagnosed till now even she has been the do no wrong child along with the last born. Rebekah has been my mom's princess and Gabriel is the do no wrong prince. I love my sibling but I see my sister 1 time a year and it isn't because of her cepecia status or even because of her being 700 miles it is the fact that point blank I can't stand my mother...My sister has cepecia and doesn't even do ANY TREATMENTS...why because my mom does what she always did NOTHING. I can't believe that she would rather accept that my sister is sick and could die and instead of trying to help her fight and live a long life she bought her a child house when she was 4 because she claimed she wouldn't live long enough to even see becoming a teenager. Well she is 12 right now...no idea what her fev1 is or her fvc is because it has been 3 or 4 years since she has been to a cf center. My mother claims that she doesn't have mrsa or b-cepecia any more...show me the results of a bronc and I will believe her but I can't just not believe...when I visited this year I wore my mask and stayed out of enclosed spaces...my sister didn't instead she climbed in my car and I'm pretty sure that is how I wound up with both cepecia and mrsa she was just playing around and acting with the advice of my mother she believes she is 'CURED'. Sorry u don't have b-cepecia for 10 years and miraculously just get over it and are free and clear without doing a single treatment, or taking any antibiotics for the last 9 years since I moved out.
Sorry if this isn't what your looking for in a return post.
Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

My parents have 8 children...I fall as number 2, my parents aren't good at raising children. Instead of being there helping us by raising us...after the first 4 of 8 children were born and got to the age when the oldest was 11 and I was 9 then decided they could start having other children and instead of having to raise them there 4 other children can raise them....my older brother left home at 16 and I left at 17, 3 years after he did...I was stuck raising 4 children, washing them, feeding them and the whole family, then to find out that number 7 child is a cf patient also and I have pa's like crazy...we were in the hospital together and I was in charge of taking care of her even when I could barely take care of myself. Well upon one of those such joint hospitalizations my sister got b-cepecia at 2 years old, by then my mother had had another child and my burdens had increased again. Not trying to complain too much but letting you all know that some big families are no walk in the park. From the time my sister was diagnosed till now even she has been the do no wrong child along with the last born. Rebekah has been my mom's princess and Gabriel is the do no wrong prince. I love my sibling but I see my sister 1 time a year and it isn't because of her cepecia status or even because of her being 700 miles it is the fact that point blank I can't stand my mother...My sister has cepecia and doesn't even do ANY TREATMENTS...why because my mom does what she always did NOTHING. I can't believe that she would rather accept that my sister is sick and could die and instead of trying to help her fight and live a long life she bought her a child house when she was 4 because she claimed she wouldn't live long enough to even see becoming a teenager. Well she is 12 right now...no idea what her fev1 is or her fvc is because it has been 3 or 4 years since she has been to a cf center. My mother claims that she doesn't have mrsa or b-cepecia any more...show me the results of a bronc and I will believe her but I can't just not believe...when I visited this year I wore my mask and stayed out of enclosed spaces...my sister didn't instead she climbed in my car and I'm pretty sure that is how I wound up with both cepecia and mrsa she was just playing around and acting with the advice of my mother she believes she is 'CURED'. Sorry u don't have b-cepecia for 10 years and miraculously just get over it and are free and clear without doing a single treatment, or taking any antibiotics for the last 9 years since I moved out.
Sorry if this isn't what your looking for in a return post.
Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

My parents have 8 children...I fall as number 2, my parents aren't good at raising children. Instead of being there helping us by raising us...after the first 4 of 8 children were born and got to the age when the oldest was 11 and I was 9 then decided they could start having other children and instead of having to raise them there 4 other children can raise them....my older brother left home at 16 and I left at 17, 3 years after he did...I was stuck raising 4 children, washing them, feeding them and the whole family, then to find out that number 7 child is a cf patient also and I have pa's like crazy...we were in the hospital together and I was in charge of taking care of her even when I could barely take care of myself. Well upon one of those such joint hospitalizations my sister got b-cepecia at 2 years old, by then my mother had had another child and my burdens had increased again. Not trying to complain too much but letting you all know that some big families are no walk in the park. From the time my sister was diagnosed till now even she has been the do no wrong child along with the last born. Rebekah has been my mom's princess and Gabriel is the do no wrong prince. I love my sibling but I see my sister 1 time a year and it isn't because of her cepecia status or even because of her being 700 miles it is the fact that point blank I can't stand my mother...My sister has cepecia and doesn't even do ANY TREATMENTS...why because my mom does what she always did NOTHING. I can't believe that she would rather accept that my sister is sick and could die and instead of trying to help her fight and live a long life she bought her a child house when she was 4 because she claimed she wouldn't live long enough to even see becoming a teenager. Well she is 12 right now...no idea what her fev1 is or her fvc is because it has been 3 or 4 years since she has been to a cf center. My mother claims that she doesn't have mrsa or b-cepecia any more...show me the results of a bronc and I will believe her but I can't just not believe...when I visited this year I wore my mask and stayed out of enclosed spaces...my sister didn't instead she climbed in my car and I'm pretty sure that is how I wound up with both cepecia and mrsa she was just playing around and acting with the advice of my mother she believes she is 'CURED'. Sorry u don't have b-cepecia for 10 years and miraculously just get over it and are free and clear without doing a single treatment, or taking any antibiotics for the last 9 years since I moved out.
Sorry if this isn't what your looking for in a return post.
Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

My parents have 8 children...I fall as number 2, my parents aren't good at raising children. Instead of being there helping us by raising us...after the first 4 of 8 children were born and got to the age when the oldest was 11 and I was 9 then decided they could start having other children and instead of having to raise them there 4 other children can raise them....my older brother left home at 16 and I left at 17, 3 years after he did...I was stuck raising 4 children, washing them, feeding them and the whole family, then to find out that number 7 child is a cf patient also and I have pa's like crazy...we were in the hospital together and I was in charge of taking care of her even when I could barely take care of myself. Well upon one of those such joint hospitalizations my sister got b-cepecia at 2 years old, by then my mother had had another child and my burdens had increased again. Not trying to complain too much but letting you all know that some big families are no walk in the park. From the time my sister was diagnosed till now even she has been the do no wrong child along with the last born. Rebekah has been my mom's princess and Gabriel is the do no wrong prince. I love my sibling but I see my sister 1 time a year and it isn't because of her cepecia status or even because of her being 700 miles it is the fact that point blank I can't stand my mother...My sister has cepecia and doesn't even do ANY TREATMENTS...why because my mom does what she always did NOTHING. I can't believe that she would rather accept that my sister is sick and could die and instead of trying to help her fight and live a long life she bought her a child house when she was 4 because she claimed she wouldn't live long enough to even see becoming a teenager. Well she is 12 right now...no idea what her fev1 is or her fvc is because it has been 3 or 4 years since she has been to a cf center. My mother claims that she doesn't have mrsa or b-cepecia any more...show me the results of a bronc and I will believe her but I can't just not believe...when I visited this year I wore my mask and stayed out of enclosed spaces...my sister didn't instead she climbed in my car and I'm pretty sure that is how I wound up with both cepecia and mrsa she was just playing around and acting with the advice of my mother she believes she is 'CURED'. Sorry u don't have b-cepecia for 10 years and miraculously just get over it and are free and clear without doing a single treatment, or taking any antibiotics for the last 9 years since I moved out.
Sorry if this isn't what your looking for in a return post.
Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

My parents have 8 children...I fall as number 2, my parents aren't good at raising children. Instead of being there helping us by raising us...after the first 4 of 8 children were born and got to the age when the oldest was 11 and I was 9 then decided they could start having other children and instead of having to raise them there 4 other children can raise them....my older brother left home at 16 and I left at 17, 3 years after he did...I was stuck raising 4 children, washing them, feeding them and the whole family, then to find out that number 7 child is a cf patient also and I have pa's like crazy...we were in the hospital together and I was in charge of taking care of her even when I could barely take care of myself. Well upon one of those such joint hospitalizations my sister got b-cepecia at 2 years old, by then my mother had had another child and my burdens had increased again. Not trying to complain too much but letting you all know that some big families are no walk in the park. From the time my sister was diagnosed till now even she has been the do no wrong child along with the last born. Rebekah has been my mom's princess and Gabriel is the do no wrong prince. I love my sibling but I see my sister 1 time a year and it isn't because of her cepecia status or even because of her being 700 miles it is the fact that point blank I can't stand my mother...My sister has cepecia and doesn't even do ANY TREATMENTS...why because my mom does what she always did NOTHING. I can't believe that she would rather accept that my sister is sick and could die and instead of trying to help her fight and live a long life she bought her a child house when she was 4 because she claimed she wouldn't live long enough to even see becoming a teenager. Well she is 12 right now...no idea what her fev1 is or her fvc is because it has been 3 or 4 years since she has been to a cf center. My mother claims that she doesn't have mrsa or b-cepecia any more...show me the results of a bronc and I will believe her but I can't just not believe...when I visited this year I wore my mask and stayed out of enclosed spaces...my sister didn't instead she climbed in my car and I'm pretty sure that is how I wound up with both cepecia and mrsa she was just playing around and acting with the advice of my mother she believes she is 'CURED'. Sorry u don't have b-cepecia for 10 years and miraculously just get over it and are free and clear without doing a single treatment, or taking any antibiotics for the last 9 years since I moved out.
 Sorry if this isn't what your looking for in a return post.
 Joshua A. Benjamin

Lex · Dec 13, 2009

My brothers had a form of survivor's guilt, I believe.

Anyway, since I got actively listed for a TX a couple months ago, they have both stopped smoking and became donors. One of my brothers even became a runner!

I'm sure they often think, "It could've been me." But I'm glad it was me. I couldn't stand to watch one of them go through what I've gone through.

Lex · Dec 13, 2009

My brothers had a form of survivor's guilt, I believe.

Anyway, since I got actively listed for a TX a couple months ago, they have both stopped smoking and became donors. One of my brothers even became a runner!

I'm sure they often think, "It could've been me." But I'm glad it was me. I couldn't stand to watch one of them go through what I've gone through.

Lex · Dec 13, 2009

My brothers had a form of survivor's guilt, I believe.

Anyway, since I got actively listed for a TX a couple months ago, they have both stopped smoking and became donors. One of my brothers even became a runner!

I'm sure they often think, "It could've been me." But I'm glad it was me. I couldn't stand to watch one of them go through what I've gone through.

Lex · Dec 13, 2009

My brothers had a form of survivor's guilt, I believe.

Anyway, since I got actively listed for a TX a couple months ago, they have both stopped smoking and became donors. One of my brothers even became a runner!

I'm sure they often think, "It could've been me." But I'm glad it was me. I couldn't stand to watch one of them go through what I've gone through.

Lex · Dec 13, 2009

My brothers had a form of survivor's guilt, I believe.
 
 Anyway, since I got actively listed for a TX a couple months ago, they have both stopped smoking and became donors. One of my brothers even became a runner!
 
 I'm sure they often think, "It could've been me." But I'm glad it was me. I couldn't stand to watch one of them go through what I've gone through.

TestifyToLove · Dec 13, 2009

Well, we have a couple of key differences than most families with CF and siblings.

First, we had a different, consuming and chronic health condition in the family before we brought a child with CF into the house. We have an 8.5 year old with severe Hemophilia B in the house. He requires twice weekly IV infusion and just has to do things different to minimize the risks of bleeding.

Our goal was always to treat Ch like a normal child and to not have him be the spotlight in the house, but for everyone to understand that these are just the things that have to be done for Ch's health and safety.

The second difference is that we adopted medical needs children. So, having a son with CF, just like having a son with Hemophilia, was a deliberate and concious act in our house. It wasn't a surprise. There isn't guilt to anyone for their having these, we knew we had them when we brought them home.

The children did not know M was terminal when he came home. We allowed them to assume CF was chronic more like Hemophilia, where you only lose an average of 10 years of lifespan due to the disease.

I really think that M's Bipolar and severe Autism have been much bigger stress factors on this family. Because of his mental health and developmental issues, M is always front and center in attention, even when we attempt to minimize it. If he's not holding the family hostage, he will poop himself for the express purpose of doing so...or rage and attack someone...or flash people in public.

Autism is MUCH harder for us to face as a family than CF has been. His CF simply means we do different things for M and everyone understands what it is and why we do those different things. None of us truly understand Autism. It just doesn't make sense to me. And, even to the so-called experts there are as many questions as answers. Autism makes him wholly unpleasant to be around and Bipolar makes him often dangerous.

Consequently, we all love M. We all want to help him. But, no one truly understands his demons nor how to provide him relief from his internal demons.

TestifyToLove · Dec 13, 2009

Well, we have a couple of key differences than most families with CF and siblings.

First, we had a different, consuming and chronic health condition in the family before we brought a child with CF into the house. We have an 8.5 year old with severe Hemophilia B in the house. He requires twice weekly IV infusion and just has to do things different to minimize the risks of bleeding.

Our goal was always to treat Ch like a normal child and to not have him be the spotlight in the house, but for everyone to understand that these are just the things that have to be done for Ch's health and safety.

The second difference is that we adopted medical needs children. So, having a son with CF, just like having a son with Hemophilia, was a deliberate and concious act in our house. It wasn't a surprise. There isn't guilt to anyone for their having these, we knew we had them when we brought them home.

The children did not know M was terminal when he came home. We allowed them to assume CF was chronic more like Hemophilia, where you only lose an average of 10 years of lifespan due to the disease.

I really think that M's Bipolar and severe Autism have been much bigger stress factors on this family. Because of his mental health and developmental issues, M is always front and center in attention, even when we attempt to minimize it. If he's not holding the family hostage, he will poop himself for the express purpose of doing so...or rage and attack someone...or flash people in public.

Autism is MUCH harder for us to face as a family than CF has been. His CF simply means we do different things for M and everyone understands what it is and why we do those different things. None of us truly understand Autism. It just doesn't make sense to me. And, even to the so-called experts there are as many questions as answers. Autism makes him wholly unpleasant to be around and Bipolar makes him often dangerous.

Consequently, we all love M. We all want to help him. But, no one truly understands his demons nor how to provide him relief from his internal demons.

TestifyToLove · Dec 13, 2009

Well, we have a couple of key differences than most families with CF and siblings.

First, we had a different, consuming and chronic health condition in the family before we brought a child with CF into the house. We have an 8.5 year old with severe Hemophilia B in the house. He requires twice weekly IV infusion and just has to do things different to minimize the risks of bleeding.

Our goal was always to treat Ch like a normal child and to not have him be the spotlight in the house, but for everyone to understand that these are just the things that have to be done for Ch's health and safety.

The second difference is that we adopted medical needs children. So, having a son with CF, just like having a son with Hemophilia, was a deliberate and concious act in our house. It wasn't a surprise. There isn't guilt to anyone for their having these, we knew we had them when we brought them home.

The children did not know M was terminal when he came home. We allowed them to assume CF was chronic more like Hemophilia, where you only lose an average of 10 years of lifespan due to the disease.

I really think that M's Bipolar and severe Autism have been much bigger stress factors on this family. Because of his mental health and developmental issues, M is always front and center in attention, even when we attempt to minimize it. If he's not holding the family hostage, he will poop himself for the express purpose of doing so...or rage and attack someone...or flash people in public.

Autism is MUCH harder for us to face as a family than CF has been. His CF simply means we do different things for M and everyone understands what it is and why we do those different things. None of us truly understand Autism. It just doesn't make sense to me. And, even to the so-called experts there are as many questions as answers. Autism makes him wholly unpleasant to be around and Bipolar makes him often dangerous.

Consequently, we all love M. We all want to help him. But, no one truly understands his demons nor how to provide him relief from his internal demons.

TestifyToLove · Dec 13, 2009

Well, we have a couple of key differences than most families with CF and siblings.

First, we had a different, consuming and chronic health condition in the family before we brought a child with CF into the house. We have an 8.5 year old with severe Hemophilia B in the house. He requires twice weekly IV infusion and just has to do things different to minimize the risks of bleeding.

Our goal was always to treat Ch like a normal child and to not have him be the spotlight in the house, but for everyone to understand that these are just the things that have to be done for Ch's health and safety.

The second difference is that we adopted medical needs children. So, having a son with CF, just like having a son with Hemophilia, was a deliberate and concious act in our house. It wasn't a surprise. There isn't guilt to anyone for their having these, we knew we had them when we brought them home.

The children did not know M was terminal when he came home. We allowed them to assume CF was chronic more like Hemophilia, where you only lose an average of 10 years of lifespan due to the disease.

I really think that M's Bipolar and severe Autism have been much bigger stress factors on this family. Because of his mental health and developmental issues, M is always front and center in attention, even when we attempt to minimize it. If he's not holding the family hostage, he will poop himself for the express purpose of doing so...or rage and attack someone...or flash people in public.

Autism is MUCH harder for us to face as a family than CF has been. His CF simply means we do different things for M and everyone understands what it is and why we do those different things. None of us truly understand Autism. It just doesn't make sense to me. And, even to the so-called experts there are as many questions as answers. Autism makes him wholly unpleasant to be around and Bipolar makes him often dangerous.

Consequently, we all love M. We all want to help him. But, no one truly understands his demons nor how to provide him relief from his internal demons.

TestifyToLove · Dec 13, 2009

Well, we have a couple of key differences than most families with CF and siblings.
 
 First, we had a different, consuming and chronic health condition in the family before we brought a child with CF into the house. We have an 8.5 year old with severe Hemophilia B in the house. He requires twice weekly IV infusion and just has to do things different to minimize the risks of bleeding.
 
 Our goal was always to treat Ch like a normal child and to not have him be the spotlight in the house, but for everyone to understand that these are just the things that have to be done for Ch's health and safety.
 
 The second difference is that we adopted medical needs children. So, having a son with CF, just like having a son with Hemophilia, was a deliberate and concious act in our house. It wasn't a surprise. There isn't guilt to anyone for their having these, we knew we had them when we brought them home.
 
 The children did not know M was terminal when he came home. We allowed them to assume CF was chronic more like Hemophilia, where you only lose an average of 10 years of lifespan due to the disease.
 
 I really think that M's Bipolar and severe Autism have been much bigger stress factors on this family. Because of his mental health and developmental issues, M is always front and center in attention, even when we attempt to minimize it. If he's not holding the family hostage, he will poop himself for the express purpose of doing so...or rage and attack someone...or flash people in public.
 
 Autism is MUCH harder for us to face as a family than CF has been. His CF simply means we do different things for M and everyone understands what it is and why we do those different things. None of us truly understand Autism. It just doesn't make sense to me. And, even to the so-called experts there are as many questions as answers. Autism makes him wholly unpleasant to be around and Bipolar makes him often dangerous.
 
 Consequently, we all love M. We all want to help him. But, no one truly understands his demons nor how to provide him relief from his internal demons.

chrissyd · Dec 14, 2009

MY brother can not even talk about me being sick. If I talk about it our make a comment about it; I can tell how hard it is for him to not start to cry. We thought for a while he might have CF as well, but after being tested he was found to be a carrier (but we did have a scare when the test results were misread).

I have always been the strong one in my family, I always felt like I had to be. I wasn't dx'd until I was 21 and after I was everyone felt bad. You see most of my family didn't think I was really sick. When they found out it changed how they saw me; but it was too late. I was already the strong one, the one who took care of everyone else when it was needed.

<img src="i/expressions/rose.gif" border="0">

chrissyd · Dec 14, 2009

MY brother can not even talk about me being sick. If I talk about it our make a comment about it; I can tell how hard it is for him to not start to cry. We thought for a while he might have CF as well, but after being tested he was found to be a carrier (but we did have a scare when the test results were misread).

I have always been the strong one in my family, I always felt like I had to be. I wasn't dx'd until I was 21 and after I was everyone felt bad. You see most of my family didn't think I was really sick. When they found out it changed how they saw me; but it was too late. I was already the strong one, the one who took care of everyone else when it was needed.

<img src="i/expressions/rose.gif" border="0">

chrissyd · Dec 14, 2009

MY brother can not even talk about me being sick. If I talk about it our make a comment about it; I can tell how hard it is for him to not start to cry. We thought for a while he might have CF as well, but after being tested he was found to be a carrier (but we did have a scare when the test results were misread).

I have always been the strong one in my family, I always felt like I had to be. I wasn't dx'd until I was 21 and after I was everyone felt bad. You see most of my family didn't think I was really sick. When they found out it changed how they saw me; but it was too late. I was already the strong one, the one who took care of everyone else when it was needed.

<img src="i/expressions/rose.gif" border="0">

chrissyd · Dec 14, 2009

MY brother can not even talk about me being sick. If I talk about it our make a comment about it; I can tell how hard it is for him to not start to cry. We thought for a while he might have CF as well, but after being tested he was found to be a carrier (but we did have a scare when the test results were misread).

I have always been the strong one in my family, I always felt like I had to be. I wasn't dx'd until I was 21 and after I was everyone felt bad. You see most of my family didn't think I was really sick. When they found out it changed how they saw me; but it was too late. I was already the strong one, the one who took care of everyone else when it was needed.

<img src="i/expressions/rose.gif" border="0">

chrissyd · Dec 14, 2009

MY brother can not even talk about me being sick. If I talk about it our make a comment about it; I can tell how hard it is for him to not start to cry. We thought for a while he might have CF as well, but after being tested he was found to be a carrier (but we did have a scare when the test results were misread).
 
 I have always been the strong one in my family, I always felt like I had to be. I wasn't dx'd until I was 21 and after I was everyone felt bad. You see most of my family didn't think I was really sick. When they found out it changed how they saw me; but it was too late. I was already the strong one, the one who took care of everyone else when it was needed.
 
 <img src="i/expressions/rose.gif" border="0">

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