why do they treat him like this?

[mneville]

I guess we've been very lucky. Aidan was diagnosed at 8 days old and it was a complete shock. But our families have been amazing!

Aidan has 15 first cousins all under the age of 7 and we are all very close. Aidan is the only one affected with CF. Our families know that we take his health very seriously but that he is just a regular kid. They wash hands, they dont go near him if they are sick, they don't let him overheat...But they also know how to give him enzymes, do his nebs and VEST and just treat him normally. We don't really make a big deal out of it so neither do they....Education is key.

Megan

 

[mneville]

I guess we've been very lucky. Aidan was diagnosed at 8 days old and it was a complete shock. But our families have been amazing!

Aidan has 15 first cousins all under the age of 7 and we are all very close. Aidan is the only one affected with CF. Our families know that we take his health very seriously but that he is just a regular kid. They wash hands, they dont go near him if they are sick, they don't let him overheat...But they also know how to give him enzymes, do his nebs and VEST and just treat him normally. We don't really make a big deal out of it so neither do they....Education is key.

Megan

 

[mneville]

I guess we've been very lucky. Aidan was diagnosed at 8 days old and it was a complete shock. But our families have been amazing!

Aidan has 15 first cousins all under the age of 7 and we are all very close. Aidan is the only one affected with CF. Our families know that we take his health very seriously but that he is just a regular kid. They wash hands, they dont go near him if they are sick, they don't let him overheat...But they also know how to give him enzymes, do his nebs and VEST and just treat him normally. We don't really make a big deal out of it so neither do they....Education is key.

Megan

 

[mneville]

I guess we've been very lucky. Aidan was diagnosed at 8 days old and it was a complete shock. But our families have been amazing!

Aidan has 15 first cousins all under the age of 7 and we are all very close. Aidan is the only one affected with CF. Our families know that we take his health very seriously but that he is just a regular kid. They wash hands, they dont go near him if they are sick, they don't let him overheat...But they also know how to give him enzymes, do his nebs and VEST and just treat him normally. We don't really make a big deal out of it so neither do they....Education is key.

Megan

 

[mneville]

I guess we've been very lucky. Aidan was diagnosed at 8 days old and it was a complete shock. But our families have been amazing!

Aidan has 15 first cousins all under the age of 7 and we are all very close. Aidan is the only one affected with CF. Our families know that we take his health very seriously but that he is just a regular kid. They wash hands, they dont go near him if they are sick, they don't let him overheat...But they also know how to give him enzymes, do his nebs and VEST and just treat him normally. We don't really make a big deal out of it so neither do they....Education is key.

Megan

 

[LReyna]

Hi
I have a two year old granddaughter with CF and we are having somewhat the same problem with my daughters in laws. It is hurting my daughters feelings so bad that they want to make her daughter feel like an outcast from their family. Other family members will get together and take the younger kids to places together they are all under the age of 6 but they never include her in anything and they will always try and come up with an excuse of some sort like we didn't want her to be around so may kids and pick up a something . My granddaughter seems very healthy and if you didn't know about her CF you'd never know she was sick other than taking enzymes to eat and breathing treatments daily she is no different that the rest of the kids she has probbaly been sick less times then the other kids.My husband and I watch the baby daily for her parents to work and if we ever have an emergency and need my son in laws family to step up and help us they would never be able to do it they have no idea what her daily treatments are or anything about the disease my daughter has tried to get them involved and talk to them about Cf but the will always find a way to change the subject they just don't want to learn anything there is about her or her disease she is just an innocent child in this that one day will wonder how come all the other kids were togehter playing and I was never there she doesn't undersatnd now but one day she will but the way I see it they are the ones missing out on the beautiful child they have no idea just how special she is. I try and tell my daughter to just let it go and don't involve them in anything with her anymore eventually they may get the message that she isn't an outcast she is just a normal child just like the rest of them she may just need a little medication daily to make her life alittle easier.

 

[LReyna]

Hi
I have a two year old granddaughter with CF and we are having somewhat the same problem with my daughters in laws. It is hurting my daughters feelings so bad that they want to make her daughter feel like an outcast from their family. Other family members will get together and take the younger kids to places together they are all under the age of 6 but they never include her in anything and they will always try and come up with an excuse of some sort like we didn't want her to be around so may kids and pick up a something . My granddaughter seems very healthy and if you didn't know about her CF you'd never know she was sick other than taking enzymes to eat and breathing treatments daily she is no different that the rest of the kids she has probbaly been sick less times then the other kids.My husband and I watch the baby daily for her parents to work and if we ever have an emergency and need my son in laws family to step up and help us they would never be able to do it they have no idea what her daily treatments are or anything about the disease my daughter has tried to get them involved and talk to them about Cf but the will always find a way to change the subject they just don't want to learn anything there is about her or her disease she is just an innocent child in this that one day will wonder how come all the other kids were togehter playing and I was never there she doesn't undersatnd now but one day she will but the way I see it they are the ones missing out on the beautiful child they have no idea just how special she is. I try and tell my daughter to just let it go and don't involve them in anything with her anymore eventually they may get the message that she isn't an outcast she is just a normal child just like the rest of them she may just need a little medication daily to make her life alittle easier.

 

[LReyna]

Hi
I have a two year old granddaughter with CF and we are having somewhat the same problem with my daughters in laws. It is hurting my daughters feelings so bad that they want to make her daughter feel like an outcast from their family. Other family members will get together and take the younger kids to places together they are all under the age of 6 but they never include her in anything and they will always try and come up with an excuse of some sort like we didn't want her to be around so may kids and pick up a something . My granddaughter seems very healthy and if you didn't know about her CF you'd never know she was sick other than taking enzymes to eat and breathing treatments daily she is no different that the rest of the kids she has probbaly been sick less times then the other kids.My husband and I watch the baby daily for her parents to work and if we ever have an emergency and need my son in laws family to step up and help us they would never be able to do it they have no idea what her daily treatments are or anything about the disease my daughter has tried to get them involved and talk to them about Cf but the will always find a way to change the subject they just don't want to learn anything there is about her or her disease she is just an innocent child in this that one day will wonder how come all the other kids were togehter playing and I was never there she doesn't undersatnd now but one day she will but the way I see it they are the ones missing out on the beautiful child they have no idea just how special she is. I try and tell my daughter to just let it go and don't involve them in anything with her anymore eventually they may get the message that she isn't an outcast she is just a normal child just like the rest of them she may just need a little medication daily to make her life alittle easier.

 

[LReyna]

Hi
I have a two year old granddaughter with CF and we are having somewhat the same problem with my daughters in laws. It is hurting my daughters feelings so bad that they want to make her daughter feel like an outcast from their family. Other family members will get together and take the younger kids to places together they are all under the age of 6 but they never include her in anything and they will always try and come up with an excuse of some sort like we didn't want her to be around so may kids and pick up a something . My granddaughter seems very healthy and if you didn't know about her CF you'd never know she was sick other than taking enzymes to eat and breathing treatments daily she is no different that the rest of the kids she has probbaly been sick less times then the other kids.My husband and I watch the baby daily for her parents to work and if we ever have an emergency and need my son in laws family to step up and help us they would never be able to do it they have no idea what her daily treatments are or anything about the disease my daughter has tried to get them involved and talk to them about Cf but the will always find a way to change the subject they just don't want to learn anything there is about her or her disease she is just an innocent child in this that one day will wonder how come all the other kids were togehter playing and I was never there she doesn't undersatnd now but one day she will but the way I see it they are the ones missing out on the beautiful child they have no idea just how special she is. I try and tell my daughter to just let it go and don't involve them in anything with her anymore eventually they may get the message that she isn't an outcast she is just a normal child just like the rest of them she may just need a little medication daily to make her life alittle easier.

 

[LReyna]

Hi
I have a two year old granddaughter with CF and we are having somewhat the same problem with my daughters in laws. It is hurting my daughters feelings so bad that they want to make her daughter feel like an outcast from their family. Other family members will get together and take the younger kids to places together they are all under the age of 6 but they never include her in anything and they will always try and come up with an excuse of some sort like we didn't want her to be around so may kids and pick up a something . My granddaughter seems very healthy and if you didn't know about her CF you'd never know she was sick other than taking enzymes to eat and breathing treatments daily she is no different that the rest of the kids she has probbaly been sick less times then the other kids.My husband and I watch the baby daily for her parents to work and if we ever have an emergency and need my son in laws family to step up and help us they would never be able to do it they have no idea what her daily treatments are or anything about the disease my daughter has tried to get them involved and talk to them about Cf but the will always find a way to change the subject they just don't want to learn anything there is about her or her disease she is just an innocent child in this that one day will wonder how come all the other kids were togehter playing and I was never there she doesn't undersatnd now but one day she will but the way I see it they are the ones missing out on the beautiful child they have no idea just how special she is. I try and tell my daughter to just let it go and don't involve them in anything with her anymore eventually they may get the message that she isn't an outcast she is just a normal child just like the rest of them she may just need a little medication daily to make her life alittle easier.

 

[coltsfan715]

I am going to throw my cents in here - it may be more than 2 but who knows.

I agree with Emily for one - I think they need information. Alot of people's behaviors simply come from a lack of knowledge.

I will also say that many of the things that people mentioned in this thread did not sound like they were TRYING to treat the child differently but more like they were scared or unsure of THEIR (the adults) ability to take care of them. That again can go back to educating them.

It is important to remember that what we go through everyday is easy and nothing to be concerned over. It is easy for us to know what is normal, okay or that everything will be fine versus when something is wrong - what is a "sick" cough and what is an abnormal bowel movement. We deal with this everyday - our extended family only deals with these issues once and a blue moon. To me that is alot of it and it is totally normal. I will say that most of my family was unaware of all the ins and outs of CF until I started the process for transplant. I got sick last year and actually had relatives calling and asking my mom when I was going to stop getting sick and improve. My mom and I were dumbfounded because they have known about CF my entire life - at least we thought they did but apparently they didn't get it when we would talk to them about it before. So even though it is driving you crazy (and I can understand why) it will just take some time for CF to become "normal" to them - but definitely educate them cause that will hopefully make it easier.

I think alot of it is nervousness, insecurity in their ability, being unaware of the realitites of CF and so on. Also I think it would be important to tell them that you are wanting your child to be treated as normally as possible. Things will be difficult for him anyway down the road - he will feel alone or different at some point in time due to this disease (at least most people I know have felt that way) - it is important that he not feel out of place in his own family.

Take Care and Good luck with the family.
Lindsey

 

[coltsfan715]

I am going to throw my cents in here - it may be more than 2 but who knows.

I agree with Emily for one - I think they need information. Alot of people's behaviors simply come from a lack of knowledge.

I will also say that many of the things that people mentioned in this thread did not sound like they were TRYING to treat the child differently but more like they were scared or unsure of THEIR (the adults) ability to take care of them. That again can go back to educating them.

It is important to remember that what we go through everyday is easy and nothing to be concerned over. It is easy for us to know what is normal, okay or that everything will be fine versus when something is wrong - what is a "sick" cough and what is an abnormal bowel movement. We deal with this everyday - our extended family only deals with these issues once and a blue moon. To me that is alot of it and it is totally normal. I will say that most of my family was unaware of all the ins and outs of CF until I started the process for transplant. I got sick last year and actually had relatives calling and asking my mom when I was going to stop getting sick and improve. My mom and I were dumbfounded because they have known about CF my entire life - at least we thought they did but apparently they didn't get it when we would talk to them about it before. So even though it is driving you crazy (and I can understand why) it will just take some time for CF to become "normal" to them - but definitely educate them cause that will hopefully make it easier.

I think alot of it is nervousness, insecurity in their ability, being unaware of the realitites of CF and so on. Also I think it would be important to tell them that you are wanting your child to be treated as normally as possible. Things will be difficult for him anyway down the road - he will feel alone or different at some point in time due to this disease (at least most people I know have felt that way) - it is important that he not feel out of place in his own family.

Take Care and Good luck with the family.
Lindsey

 

[coltsfan715]

I am going to throw my cents in here - it may be more than 2 but who knows.

I agree with Emily for one - I think they need information. Alot of people's behaviors simply come from a lack of knowledge.

I will also say that many of the things that people mentioned in this thread did not sound like they were TRYING to treat the child differently but more like they were scared or unsure of THEIR (the adults) ability to take care of them. That again can go back to educating them.

It is important to remember that what we go through everyday is easy and nothing to be concerned over. It is easy for us to know what is normal, okay or that everything will be fine versus when something is wrong - what is a "sick" cough and what is an abnormal bowel movement. We deal with this everyday - our extended family only deals with these issues once and a blue moon. To me that is alot of it and it is totally normal. I will say that most of my family was unaware of all the ins and outs of CF until I started the process for transplant. I got sick last year and actually had relatives calling and asking my mom when I was going to stop getting sick and improve. My mom and I were dumbfounded because they have known about CF my entire life - at least we thought they did but apparently they didn't get it when we would talk to them about it before. So even though it is driving you crazy (and I can understand why) it will just take some time for CF to become "normal" to them - but definitely educate them cause that will hopefully make it easier.

I think alot of it is nervousness, insecurity in their ability, being unaware of the realitites of CF and so on. Also I think it would be important to tell them that you are wanting your child to be treated as normally as possible. Things will be difficult for him anyway down the road - he will feel alone or different at some point in time due to this disease (at least most people I know have felt that way) - it is important that he not feel out of place in his own family.

Take Care and Good luck with the family.
Lindsey

 

[coltsfan715]

I am going to throw my cents in here - it may be more than 2 but who knows.

I agree with Emily for one - I think they need information. Alot of people's behaviors simply come from a lack of knowledge.

I will also say that many of the things that people mentioned in this thread did not sound like they were TRYING to treat the child differently but more like they were scared or unsure of THEIR (the adults) ability to take care of them. That again can go back to educating them.

It is important to remember that what we go through everyday is easy and nothing to be concerned over. It is easy for us to know what is normal, okay or that everything will be fine versus when something is wrong - what is a "sick" cough and what is an abnormal bowel movement. We deal with this everyday - our extended family only deals with these issues once and a blue moon. To me that is alot of it and it is totally normal. I will say that most of my family was unaware of all the ins and outs of CF until I started the process for transplant. I got sick last year and actually had relatives calling and asking my mom when I was going to stop getting sick and improve. My mom and I were dumbfounded because they have known about CF my entire life - at least we thought they did but apparently they didn't get it when we would talk to them about it before. So even though it is driving you crazy (and I can understand why) it will just take some time for CF to become "normal" to them - but definitely educate them cause that will hopefully make it easier.

I think alot of it is nervousness, insecurity in their ability, being unaware of the realitites of CF and so on. Also I think it would be important to tell them that you are wanting your child to be treated as normally as possible. Things will be difficult for him anyway down the road - he will feel alone or different at some point in time due to this disease (at least most people I know have felt that way) - it is important that he not feel out of place in his own family.

Take Care and Good luck with the family.
Lindsey

 

[coltsfan715]

I am going to throw my cents in here - it may be more than 2 but who knows.

I agree with Emily for one - I think they need information. Alot of people's behaviors simply come from a lack of knowledge.

I will also say that many of the things that people mentioned in this thread did not sound like they were TRYING to treat the child differently but more like they were scared or unsure of THEIR (the adults) ability to take care of them. That again can go back to educating them.

It is important to remember that what we go through everyday is easy and nothing to be concerned over. It is easy for us to know what is normal, okay or that everything will be fine versus when something is wrong - what is a "sick" cough and what is an abnormal bowel movement. We deal with this everyday - our extended family only deals with these issues once and a blue moon. To me that is alot of it and it is totally normal. I will say that most of my family was unaware of all the ins and outs of CF until I started the process for transplant. I got sick last year and actually had relatives calling and asking my mom when I was going to stop getting sick and improve. My mom and I were dumbfounded because they have known about CF my entire life - at least we thought they did but apparently they didn't get it when we would talk to them about it before. So even though it is driving you crazy (and I can understand why) it will just take some time for CF to become "normal" to them - but definitely educate them cause that will hopefully make it easier.

I think alot of it is nervousness, insecurity in their ability, being unaware of the realitites of CF and so on. Also I think it would be important to tell them that you are wanting your child to be treated as normally as possible. Things will be difficult for him anyway down the road - he will feel alone or different at some point in time due to this disease (at least most people I know have felt that way) - it is important that he not feel out of place in his own family.

Take Care and Good luck with the family.
Lindsey

 

[lilismom]

Lindsey,
You raise some very good points. In the case of MIL her only previous knowledge of CF was years ago when she was teaching school and had a grade school child in her class who passed away. So when she heard Lili had CF she was extremely upset.

I think I'll talk to my husband about it and have him talk to her about it.

Thanks

 

[lilismom]

Lindsey,
You raise some very good points. In the case of MIL her only previous knowledge of CF was years ago when she was teaching school and had a grade school child in her class who passed away. So when she heard Lili had CF she was extremely upset.

I think I'll talk to my husband about it and have him talk to her about it.

Thanks

 

[lilismom]

Lindsey,
You raise some very good points. In the case of MIL her only previous knowledge of CF was years ago when she was teaching school and had a grade school child in her class who passed away. So when she heard Lili had CF she was extremely upset.

I think I'll talk to my husband about it and have him talk to her about it.

Thanks

 

[lilismom]

Lindsey,
You raise some very good points. In the case of MIL her only previous knowledge of CF was years ago when she was teaching school and had a grade school child in her class who passed away. So when she heard Lili had CF she was extremely upset.

I think I'll talk to my husband about it and have him talk to her about it.

Thanks

 

[lilismom]

Lindsey,
You raise some very good points. In the case of MIL her only previous knowledge of CF was years ago when she was teaching school and had a grade school child in her class who passed away. So when she heard Lili had CF she was extremely upset.

I think I'll talk to my husband about it and have him talk to her about it.

Thanks