Friends

P

PlumPerfect

New member
I really have a hard time with alot of things when it comes to people... I have had more issues with friends and even church who doesn't seem to want to know about cf.

Yesterday I went to a friends house to see her decorations and cut her daughters hair, but they smoke and have lots of animals, so I couldn't bring the kids. I also had a friend who is moving have a bonfire last night and once again can't bring the kids. Another friend had his kid there and at first I thought oh he can be at a bonfire, but he can. Just my son can't.

I realize that there are so many things we can't do to protect him. We have to get a sitter if we do want to do something that we normally would be able to bring kids to. Our friends wedding but half the people smoke. Just things like that.

My church is afraid to give him enzymes so i have to go give them and it pulls me away from the sermon that I drove all the way to hear.. it just makes me not want to go and just do bible stories at home for the kids. I want to have a cf benifit at the church and they don't even seem enthused about it. They just told me to get a proposal together and present it to Allen.

Any ways it is just so flipping annoying how most people are not going to change their lives to be your friend or be in your life, only a few people have done that and it really shows who your real friends are. I have One friend who is amazing and she learned about cf, she told me she wanted me to teach her the treaments, that way if I ever needed her to take him she would know what to do.she has gone aabove and beyond what I would expect, but she makes up for all those others wo could care less.

I am sure i will aquire friends that will accept and respect Brandons limitations, its just hard.
 
P

PlumPerfect

New member
I really have a hard time with alot of things when it comes to people... I have had more issues with friends and even church who doesn't seem to want to know about cf.

Yesterday I went to a friends house to see her decorations and cut her daughters hair, but they smoke and have lots of animals, so I couldn't bring the kids. I also had a friend who is moving have a bonfire last night and once again can't bring the kids. Another friend had his kid there and at first I thought oh he can be at a bonfire, but he can. Just my son can't.

I realize that there are so many things we can't do to protect him. We have to get a sitter if we do want to do something that we normally would be able to bring kids to. Our friends wedding but half the people smoke. Just things like that.

My church is afraid to give him enzymes so i have to go give them and it pulls me away from the sermon that I drove all the way to hear.. it just makes me not want to go and just do bible stories at home for the kids. I want to have a cf benifit at the church and they don't even seem enthused about it. They just told me to get a proposal together and present it to Allen.

Any ways it is just so flipping annoying how most people are not going to change their lives to be your friend or be in your life, only a few people have done that and it really shows who your real friends are. I have One friend who is amazing and she learned about cf, she told me she wanted me to teach her the treaments, that way if I ever needed her to take him she would know what to do.she has gone aabove and beyond what I would expect, but she makes up for all those others wo could care less.

I am sure i will aquire friends that will accept and respect Brandons limitations, its just hard.
 
P

PlumPerfect

New member
I really have a hard time with alot of things when it comes to people... I have had more issues with friends and even church who doesn't seem to want to know about cf.

Yesterday I went to a friends house to see her decorations and cut her daughters hair, but they smoke and have lots of animals, so I couldn't bring the kids. I also had a friend who is moving have a bonfire last night and once again can't bring the kids. Another friend had his kid there and at first I thought oh he can be at a bonfire, but he can. Just my son can't.

I realize that there are so many things we can't do to protect him. We have to get a sitter if we do want to do something that we normally would be able to bring kids to. Our friends wedding but half the people smoke. Just things like that.

My church is afraid to give him enzymes so i have to go give them and it pulls me away from the sermon that I drove all the way to hear.. it just makes me not want to go and just do bible stories at home for the kids. I want to have a cf benifit at the church and they don't even seem enthused about it. They just told me to get a proposal together and present it to Allen.

Any ways it is just so flipping annoying how most people are not going to change their lives to be your friend or be in your life, only a few people have done that and it really shows who your real friends are. I have One friend who is amazing and she learned about cf, she told me she wanted me to teach her the treaments, that way if I ever needed her to take him she would know what to do.she has gone aabove and beyond what I would expect, but she makes up for all those others wo could care less.

I am sure i will aquire friends that will accept and respect Brandons limitations, its just hard.
 
P

PlumPerfect

New member
I really have a hard time with alot of things when it comes to people... I have had more issues with friends and even church who doesn't seem to want to know about cf.

Yesterday I went to a friends house to see her decorations and cut her daughters hair, but they smoke and have lots of animals, so I couldn't bring the kids. I also had a friend who is moving have a bonfire last night and once again can't bring the kids. Another friend had his kid there and at first I thought oh he can be at a bonfire, but he can. Just my son can't.

I realize that there are so many things we can't do to protect him. We have to get a sitter if we do want to do something that we normally would be able to bring kids to. Our friends wedding but half the people smoke. Just things like that.

My church is afraid to give him enzymes so i have to go give them and it pulls me away from the sermon that I drove all the way to hear.. it just makes me not want to go and just do bible stories at home for the kids. I want to have a cf benifit at the church and they don't even seem enthused about it. They just told me to get a proposal together and present it to Allen.

Any ways it is just so flipping annoying how most people are not going to change their lives to be your friend or be in your life, only a few people have done that and it really shows who your real friends are. I have One friend who is amazing and she learned about cf, she told me she wanted me to teach her the treaments, that way if I ever needed her to take him she would know what to do.she has gone aabove and beyond what I would expect, but she makes up for all those others wo could care less.

I am sure i will aquire friends that will accept and respect Brandons limitations, its just hard.
 
P

PlumPerfect

New member
I really have a hard time with alot of things when it comes to people... I have had more issues with friends and even church who doesn't seem to want to know about cf.
<br />
<br />Yesterday I went to a friends house to see her decorations and cut her daughters hair, but they smoke and have lots of animals, so I couldn't bring the kids. I also had a friend who is moving have a bonfire last night and once again can't bring the kids. Another friend had his kid there and at first I thought oh he can be at a bonfire, but he can. Just my son can't.
<br />
<br />I realize that there are so many things we can't do to protect him. We have to get a sitter if we do want to do something that we normally would be able to bring kids to. Our friends wedding but half the people smoke. Just things like that.
<br />
<br />My church is afraid to give him enzymes so i have to go give them and it pulls me away from the sermon that I drove all the way to hear.. it just makes me not want to go and just do bible stories at home for the kids. I want to have a cf benifit at the church and they don't even seem enthused about it. They just told me to get a proposal together and present it to Allen.
<br />
<br />Any ways it is just so flipping annoying how most people are not going to change their lives to be your friend or be in your life, only a few people have done that and it really shows who your real friends are. I have One friend who is amazing and she learned about cf, she told me she wanted me to teach her the treaments, that way if I ever needed her to take him she would know what to do.she has gone aabove and beyond what I would expect, but she makes up for all those others wo could care less.
<br />
<br />I am sure i will aquire friends that will accept and respect Brandons limitations, its just hard.
 
M

Mommafirst

Guest
It took a long time for me to come to terms with family and friends that didn't want to learn more. Most of my close friends can give Alyssa enzymes, one could get the vest going for her. But about 5 months after diagnosis I mentioned to my MIL that the CF center had given us a book that describes the disease and the treatments and the hopes, etc. would she like to borrow it, I asked? She responded, "NO, I am comfortable with what I know."
"Really," I said, "what do you know?" She answered, "nothing, and I prefer it that way." I practically choked on my tears. I was soooo angry and soooo upset over this. The woman is an RN who teaching nursing classes, she's a bright and educated woman -- hardly the kind of response I had hoped for.

She's slowly coming around. Everyone that MATTERS will get used to it, will adjust, will help if they can. But there were a lot of folks that are just gone from my life b ecause they wouldn't learn, support, change. Oh well -- life sucks sometimes!!!
 
M

Mommafirst

Guest
It took a long time for me to come to terms with family and friends that didn't want to learn more. Most of my close friends can give Alyssa enzymes, one could get the vest going for her. But about 5 months after diagnosis I mentioned to my MIL that the CF center had given us a book that describes the disease and the treatments and the hopes, etc. would she like to borrow it, I asked? She responded, "NO, I am comfortable with what I know."
"Really," I said, "what do you know?" She answered, "nothing, and I prefer it that way." I practically choked on my tears. I was soooo angry and soooo upset over this. The woman is an RN who teaching nursing classes, she's a bright and educated woman -- hardly the kind of response I had hoped for.

She's slowly coming around. Everyone that MATTERS will get used to it, will adjust, will help if they can. But there were a lot of folks that are just gone from my life b ecause they wouldn't learn, support, change. Oh well -- life sucks sometimes!!!
 
M

Mommafirst

Guest
It took a long time for me to come to terms with family and friends that didn't want to learn more. Most of my close friends can give Alyssa enzymes, one could get the vest going for her. But about 5 months after diagnosis I mentioned to my MIL that the CF center had given us a book that describes the disease and the treatments and the hopes, etc. would she like to borrow it, I asked? She responded, "NO, I am comfortable with what I know."
"Really," I said, "what do you know?" She answered, "nothing, and I prefer it that way." I practically choked on my tears. I was soooo angry and soooo upset over this. The woman is an RN who teaching nursing classes, she's a bright and educated woman -- hardly the kind of response I had hoped for.

She's slowly coming around. Everyone that MATTERS will get used to it, will adjust, will help if they can. But there were a lot of folks that are just gone from my life b ecause they wouldn't learn, support, change. Oh well -- life sucks sometimes!!!
 
M

Mommafirst

Guest
It took a long time for me to come to terms with family and friends that didn't want to learn more. Most of my close friends can give Alyssa enzymes, one could get the vest going for her. But about 5 months after diagnosis I mentioned to my MIL that the CF center had given us a book that describes the disease and the treatments and the hopes, etc. would she like to borrow it, I asked? She responded, "NO, I am comfortable with what I know."
"Really," I said, "what do you know?" She answered, "nothing, and I prefer it that way." I practically choked on my tears. I was soooo angry and soooo upset over this. The woman is an RN who teaching nursing classes, she's a bright and educated woman -- hardly the kind of response I had hoped for.

She's slowly coming around. Everyone that MATTERS will get used to it, will adjust, will help if they can. But there were a lot of folks that are just gone from my life b ecause they wouldn't learn, support, change. Oh well -- life sucks sometimes!!!
 
M

Mommafirst

Guest
It took a long time for me to come to terms with family and friends that didn't want to learn more. Most of my close friends can give Alyssa enzymes, one could get the vest going for her. But about 5 months after diagnosis I mentioned to my MIL that the CF center had given us a book that describes the disease and the treatments and the hopes, etc. would she like to borrow it, I asked? She responded, "NO, I am comfortable with what I know."
<br />"Really," I said, "what do you know?" She answered, "nothing, and I prefer it that way." I practically choked on my tears. I was soooo angry and soooo upset over this. The woman is an RN who teaching nursing classes, she's a bright and educated woman -- hardly the kind of response I had hoped for.
<br />
<br />She's slowly coming around. Everyone that MATTERS will get used to it, will adjust, will help if they can. But there were a lot of folks that are just gone from my life b ecause they wouldn't learn, support, change. Oh well -- life sucks sometimes!!!
 
R

Ratatosk

Administrator
Staff member
It's been our friends who've been supportive and helpful. One is our "manny" on evenings when DH and I have both had meetings for work. He's dealt with enzymes, big giant diaper bombs, watching teletubbies on his big screen TV with DS, plays video games while vesting... Another invites DS over to bake cookies or play at their house on the slip-n-slide. They don't have any kids, so we refer to DS as the "community child" <img src="i/expressions/face-icon-small-smile.gif" border="0">

Family on the other hand -- OMIGOSH, my MIL and Mommafirst's must be one and the same. Too surreal!

As for the smoking issue. I tend to tell it like it is. DS can't be around smoke -- my MIL was mortified when we refused to attend a wedding reception for their favorite nephew because it was at smoky service club. She even tried to tell us "it wasn't that bad"!
 
R

Ratatosk

Administrator
Staff member
It's been our friends who've been supportive and helpful. One is our "manny" on evenings when DH and I have both had meetings for work. He's dealt with enzymes, big giant diaper bombs, watching teletubbies on his big screen TV with DS, plays video games while vesting... Another invites DS over to bake cookies or play at their house on the slip-n-slide. They don't have any kids, so we refer to DS as the "community child" <img src="i/expressions/face-icon-small-smile.gif" border="0">

Family on the other hand -- OMIGOSH, my MIL and Mommafirst's must be one and the same. Too surreal!

As for the smoking issue. I tend to tell it like it is. DS can't be around smoke -- my MIL was mortified when we refused to attend a wedding reception for their favorite nephew because it was at smoky service club. She even tried to tell us "it wasn't that bad"!
 
R

Ratatosk

Administrator
Staff member
It's been our friends who've been supportive and helpful. One is our "manny" on evenings when DH and I have both had meetings for work. He's dealt with enzymes, big giant diaper bombs, watching teletubbies on his big screen TV with DS, plays video games while vesting... Another invites DS over to bake cookies or play at their house on the slip-n-slide. They don't have any kids, so we refer to DS as the "community child" <img src="i/expressions/face-icon-small-smile.gif" border="0">

Family on the other hand -- OMIGOSH, my MIL and Mommafirst's must be one and the same. Too surreal!

As for the smoking issue. I tend to tell it like it is. DS can't be around smoke -- my MIL was mortified when we refused to attend a wedding reception for their favorite nephew because it was at smoky service club. She even tried to tell us "it wasn't that bad"!
 
R

Ratatosk

Administrator
Staff member
It's been our friends who've been supportive and helpful. One is our "manny" on evenings when DH and I have both had meetings for work. He's dealt with enzymes, big giant diaper bombs, watching teletubbies on his big screen TV with DS, plays video games while vesting... Another invites DS over to bake cookies or play at their house on the slip-n-slide. They don't have any kids, so we refer to DS as the "community child" <img src="i/expressions/face-icon-small-smile.gif" border="0">

Family on the other hand -- OMIGOSH, my MIL and Mommafirst's must be one and the same. Too surreal!

As for the smoking issue. I tend to tell it like it is. DS can't be around smoke -- my MIL was mortified when we refused to attend a wedding reception for their favorite nephew because it was at smoky service club. She even tried to tell us "it wasn't that bad"!
 
R

Ratatosk

Administrator
Staff member
It's been our friends who've been supportive and helpful. One is our "manny" on evenings when DH and I have both had meetings for work. He's dealt with enzymes, big giant diaper bombs, watching teletubbies on his big screen TV with DS, plays video games while vesting... Another invites DS over to bake cookies or play at their house on the slip-n-slide. They don't have any kids, so we refer to DS as the "community child" <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Family on the other hand -- OMIGOSH, my MIL and Mommafirst's must be one and the same. Too surreal!
<br />
<br />As for the smoking issue. I tend to tell it like it is. DS can't be around smoke -- my MIL was mortified when we refused to attend a wedding reception for their favorite nephew because it was at smoky service club. She even tried to tell us "it wasn't that bad"!
<br />
<br />
 
J

JazzysMom

New member
Sadly this is a reality of chronic illnesses in general. Even to this day as a 40 year old I run into it.

You need to do what is best for your little one. Exposure at this age to unnecessary things can be harmful so dont let them make you feel bad.

Surround yourself with those that do understand & are supportive even if its not family or "friends".

I will say that you will find out who you true friends are from an illness!

HUGS
 
J

JazzysMom

New member
Sadly this is a reality of chronic illnesses in general. Even to this day as a 40 year old I run into it.

You need to do what is best for your little one. Exposure at this age to unnecessary things can be harmful so dont let them make you feel bad.

Surround yourself with those that do understand & are supportive even if its not family or "friends".

I will say that you will find out who you true friends are from an illness!

HUGS
 
J

JazzysMom

New member
Sadly this is a reality of chronic illnesses in general. Even to this day as a 40 year old I run into it.

You need to do what is best for your little one. Exposure at this age to unnecessary things can be harmful so dont let them make you feel bad.

Surround yourself with those that do understand & are supportive even if its not family or "friends".

I will say that you will find out who you true friends are from an illness!

HUGS
 
J

JazzysMom

New member
Sadly this is a reality of chronic illnesses in general. Even to this day as a 40 year old I run into it.

You need to do what is best for your little one. Exposure at this age to unnecessary things can be harmful so dont let them make you feel bad.

Surround yourself with those that do understand & are supportive even if its not family or "friends".

I will say that you will find out who you true friends are from an illness!

HUGS
 
J

JazzysMom

New member
Sadly this is a reality of chronic illnesses in general. Even to this day as a 40 year old I run into it.
<br />
<br />You need to do what is best for your little one. Exposure at this age to unnecessary things can be harmful so dont let them make you feel bad.
<br />
<br />Surround yourself with those that do understand & are supportive even if its not family or "friends".
<br />
<br />I will say that you will find out who you true friends are from an illness!
<br />
<br />HUGS
 
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