why do they treat him like this?

[PACmommy]

I agree with Colts fan, alot of the problem with peoples not wanting to take babysitting duties and other such things is fear, they don't want to hurt your child and don't know as much about the illness as you do.
You also have to be aware that we as CF parents have tried to educate ourselves on all the ins and outs of CF, because they are our children and we want to take care of them as best as possible. Others, who don't have children with CF, do not do this. Try to remember how uneducated and scared you were when you were first introduced to CF.
Opportunities to educate others, especially extended family members occur all the time and will continue to occur. Just keep your cool and inform them as best you can. By the way, aren't you always learning something new to better treat your own child?
Best of luck to all those dealing with CF. I have to say, I've had my own bouts of frustration as well, I just try to remember that there was a time I was clueless about this subject as well.

 

[PACmommy]

I agree with Colts fan, alot of the problem with peoples not wanting to take babysitting duties and other such things is fear, they don't want to hurt your child and don't know as much about the illness as you do.
You also have to be aware that we as CF parents have tried to educate ourselves on all the ins and outs of CF, because they are our children and we want to take care of them as best as possible. Others, who don't have children with CF, do not do this. Try to remember how uneducated and scared you were when you were first introduced to CF.
Opportunities to educate others, especially extended family members occur all the time and will continue to occur. Just keep your cool and inform them as best you can. By the way, aren't you always learning something new to better treat your own child?
Best of luck to all those dealing with CF. I have to say, I've had my own bouts of frustration as well, I just try to remember that there was a time I was clueless about this subject as well.

 

[PACmommy]

I agree with Colts fan, alot of the problem with peoples not wanting to take babysitting duties and other such things is fear, they don't want to hurt your child and don't know as much about the illness as you do.
You also have to be aware that we as CF parents have tried to educate ourselves on all the ins and outs of CF, because they are our children and we want to take care of them as best as possible. Others, who don't have children with CF, do not do this. Try to remember how uneducated and scared you were when you were first introduced to CF.
Opportunities to educate others, especially extended family members occur all the time and will continue to occur. Just keep your cool and inform them as best you can. By the way, aren't you always learning something new to better treat your own child?
Best of luck to all those dealing with CF. I have to say, I've had my own bouts of frustration as well, I just try to remember that there was a time I was clueless about this subject as well.

 

[PACmommy]

I agree with Colts fan, alot of the problem with peoples not wanting to take babysitting duties and other such things is fear, they don't want to hurt your child and don't know as much about the illness as you do.
You also have to be aware that we as CF parents have tried to educate ourselves on all the ins and outs of CF, because they are our children and we want to take care of them as best as possible. Others, who don't have children with CF, do not do this. Try to remember how uneducated and scared you were when you were first introduced to CF.
Opportunities to educate others, especially extended family members occur all the time and will continue to occur. Just keep your cool and inform them as best you can. By the way, aren't you always learning something new to better treat your own child?
Best of luck to all those dealing with CF. I have to say, I've had my own bouts of frustration as well, I just try to remember that there was a time I was clueless about this subject as well.

 

[PACmommy]

I agree with Colts fan, alot of the problem with peoples not wanting to take babysitting duties and other such things is fear, they don't want to hurt your child and don't know as much about the illness as you do.
You also have to be aware that we as CF parents have tried to educate ourselves on all the ins and outs of CF, because they are our children and we want to take care of them as best as possible. Others, who don't have children with CF, do not do this. Try to remember how uneducated and scared you were when you were first introduced to CF.
Opportunities to educate others, especially extended family members occur all the time and will continue to occur. Just keep your cool and inform them as best you can. By the way, aren't you always learning something new to better treat your own child?
Best of luck to all those dealing with CF. I have to say, I've had my own bouts of frustration as well, I just try to remember that there was a time I was clueless about this subject as well.

 

[Shelly43]

I can sympathize with your concern with making your childs and your own life as normal as possible. I agree that your families need education, books, internet and or pamplets from the Doc could help.

When my son was diagnosed we all took alot of educating. But he was already a sturdy 3.5 years old and I had expressed my concerns for his health to them asking their opinions ect. Even though there is no family history on either side of CF. On his fathers side we had a sister and a sister-in-law both nurses. On my side I have an Aunt who's a nurse and my siter-in-laws father is a respitory therapist, who explained everything to my brother in detail. He also lives two blocks away and has taught my to use a stetascope, what to listen for ect..

People may surprise you, if you let them. My father read this huge book they gave me at clinic and still goes on line to find clinical study stuff for my son and I. He also went out in the first couple of months after the diagnosis and bought me and my son grave sites ( OMG, I thought I would pass out when I was told) and it still upsets me five years later. It was his way of copying and taking care of us.

My Mom, one of my best freinds in the world had a mental breakdown after being told, I was afraid to tell her much of anything for a long while. But she's learned to cope and she's the only one I trust totally with my sons care. Not even his father is good about making sure he does he's treatments.

I suppose alot of the fear is my fault, the first nurse at the clinic tried to scare the hell out of us from the start, I can see that now. She's been dismissed. And when his dad dosen't do the treatments <u>I get bent</u> so my family is worried about upsettting me by doing something wrong. But as my son gets older, they are less worried and are very eager to help out in other ways.

Even spending a day or overnight with a friend seems frightning, to my sons friends parents. I do the treaments before and hold off morning stuff until later, so all they have to do is hand him the right marked pill cups ( breakfast, supper, snack). But you can tell it makes them nervous, I have to warn them about over heating, ect.. It will get easier!

Sorry it's so long and God bless!

 

[Shelly43]

I can sympathize with your concern with making your childs and your own life as normal as possible. I agree that your families need education, books, internet and or pamplets from the Doc could help.

When my son was diagnosed we all took alot of educating. But he was already a sturdy 3.5 years old and I had expressed my concerns for his health to them asking their opinions ect. Even though there is no family history on either side of CF. On his fathers side we had a sister and a sister-in-law both nurses. On my side I have an Aunt who's a nurse and my siter-in-laws father is a respitory therapist, who explained everything to my brother in detail. He also lives two blocks away and has taught my to use a stetascope, what to listen for ect..

People may surprise you, if you let them. My father read this huge book they gave me at clinic and still goes on line to find clinical study stuff for my son and I. He also went out in the first couple of months after the diagnosis and bought me and my son grave sites ( OMG, I thought I would pass out when I was told) and it still upsets me five years later. It was his way of copying and taking care of us.

My Mom, one of my best freinds in the world had a mental breakdown after being told, I was afraid to tell her much of anything for a long while. But she's learned to cope and she's the only one I trust totally with my sons care. Not even his father is good about making sure he does he's treatments.

I suppose alot of the fear is my fault, the first nurse at the clinic tried to scare the hell out of us from the start, I can see that now. She's been dismissed. And when his dad dosen't do the treatments <u>I get bent</u> so my family is worried about upsettting me by doing something wrong. But as my son gets older, they are less worried and are very eager to help out in other ways.

Even spending a day or overnight with a friend seems frightning, to my sons friends parents. I do the treaments before and hold off morning stuff until later, so all they have to do is hand him the right marked pill cups ( breakfast, supper, snack). But you can tell it makes them nervous, I have to warn them about over heating, ect.. It will get easier!

Sorry it's so long and God bless!

 

[Shelly43]

I can sympathize with your concern with making your childs and your own life as normal as possible. I agree that your families need education, books, internet and or pamplets from the Doc could help.

When my son was diagnosed we all took alot of educating. But he was already a sturdy 3.5 years old and I had expressed my concerns for his health to them asking their opinions ect. Even though there is no family history on either side of CF. On his fathers side we had a sister and a sister-in-law both nurses. On my side I have an Aunt who's a nurse and my siter-in-laws father is a respitory therapist, who explained everything to my brother in detail. He also lives two blocks away and has taught my to use a stetascope, what to listen for ect..

People may surprise you, if you let them. My father read this huge book they gave me at clinic and still goes on line to find clinical study stuff for my son and I. He also went out in the first couple of months after the diagnosis and bought me and my son grave sites ( OMG, I thought I would pass out when I was told) and it still upsets me five years later. It was his way of copying and taking care of us.

My Mom, one of my best freinds in the world had a mental breakdown after being told, I was afraid to tell her much of anything for a long while. But she's learned to cope and she's the only one I trust totally with my sons care. Not even his father is good about making sure he does he's treatments.

I suppose alot of the fear is my fault, the first nurse at the clinic tried to scare the hell out of us from the start, I can see that now. She's been dismissed. And when his dad dosen't do the treatments <u>I get bent</u> so my family is worried about upsettting me by doing something wrong. But as my son gets older, they are less worried and are very eager to help out in other ways.

Even spending a day or overnight with a friend seems frightning, to my sons friends parents. I do the treaments before and hold off morning stuff until later, so all they have to do is hand him the right marked pill cups ( breakfast, supper, snack). But you can tell it makes them nervous, I have to warn them about over heating, ect.. It will get easier!

Sorry it's so long and God bless!

 

[Shelly43]

I can sympathize with your concern with making your childs and your own life as normal as possible. I agree that your families need education, books, internet and or pamplets from the Doc could help.

When my son was diagnosed we all took alot of educating. But he was already a sturdy 3.5 years old and I had expressed my concerns for his health to them asking their opinions ect. Even though there is no family history on either side of CF. On his fathers side we had a sister and a sister-in-law both nurses. On my side I have an Aunt who's a nurse and my siter-in-laws father is a respitory therapist, who explained everything to my brother in detail. He also lives two blocks away and has taught my to use a stetascope, what to listen for ect..

People may surprise you, if you let them. My father read this huge book they gave me at clinic and still goes on line to find clinical study stuff for my son and I. He also went out in the first couple of months after the diagnosis and bought me and my son grave sites ( OMG, I thought I would pass out when I was told) and it still upsets me five years later. It was his way of copying and taking care of us.

My Mom, one of my best freinds in the world had a mental breakdown after being told, I was afraid to tell her much of anything for a long while. But she's learned to cope and she's the only one I trust totally with my sons care. Not even his father is good about making sure he does he's treatments.

I suppose alot of the fear is my fault, the first nurse at the clinic tried to scare the hell out of us from the start, I can see that now. She's been dismissed. And when his dad dosen't do the treatments <u>I get bent</u> so my family is worried about upsettting me by doing something wrong. But as my son gets older, they are less worried and are very eager to help out in other ways.

Even spending a day or overnight with a friend seems frightning, to my sons friends parents. I do the treaments before and hold off morning stuff until later, so all they have to do is hand him the right marked pill cups ( breakfast, supper, snack). But you can tell it makes them nervous, I have to warn them about over heating, ect.. It will get easier!

Sorry it's so long and God bless!

 

[Shelly43]

I can sympathize with your concern with making your childs and your own life as normal as possible. I agree that your families need education, books, internet and or pamplets from the Doc could help.

When my son was diagnosed we all took alot of educating. But he was already a sturdy 3.5 years old and I had expressed my concerns for his health to them asking their opinions ect. Even though there is no family history on either side of CF. On his fathers side we had a sister and a sister-in-law both nurses. On my side I have an Aunt who's a nurse and my siter-in-laws father is a respitory therapist, who explained everything to my brother in detail. He also lives two blocks away and has taught my to use a stetascope, what to listen for ect..

People may surprise you, if you let them. My father read this huge book they gave me at clinic and still goes on line to find clinical study stuff for my son and I. He also went out in the first couple of months after the diagnosis and bought me and my son grave sites ( OMG, I thought I would pass out when I was told) and it still upsets me five years later. It was his way of copying and taking care of us.

My Mom, one of my best freinds in the world had a mental breakdown after being told, I was afraid to tell her much of anything for a long while. But she's learned to cope and she's the only one I trust totally with my sons care. Not even his father is good about making sure he does he's treatments.

I suppose alot of the fear is my fault, the first nurse at the clinic tried to scare the hell out of us from the start, I can see that now. She's been dismissed. And when his dad dosen't do the treatments <u>I get bent</u> so my family is worried about upsettting me by doing something wrong. But as my son gets older, they are less worried and are very eager to help out in other ways.

Even spending a day or overnight with a friend seems frightning, to my sons friends parents. I do the treaments before and hold off morning stuff until later, so all they have to do is hand him the right marked pill cups ( breakfast, supper, snack). But you can tell it makes them nervous, I have to warn them about over heating, ect.. It will get easier!

Sorry it's so long and God bless!