You know who your real friends are...

M

Mommafirst

Guest
I had a really hard time with this in the beginning, I most definitely lost some friends along the way. I've realized that for the most part, people are very self-centered. They don't mean to ignore my needs, they just get consumed with their own stuff. And let's face it, understanding all we do to keep our CFers healthy. The treatments, the meds, the doctor's appointments, the hospitalizations, etc... its beyond understanding.

I think the thing that upset me the most was that my friends would look at my normal looking kid and I could feel them rolling their eyes and practically say, "she looks normal, she must be normal, this is what you got, now accept it and get on with it."

I've found the vast majority of my support from people in similar situations. And my husband. In the beginning there was great support from some of my friends, but after awhile it seemed to get old for them, while I was still hurting. It has definitely left a rift in many of my relationships.
 
M

Mommafirst

Guest
I had a really hard time with this in the beginning, I most definitely lost some friends along the way. I've realized that for the most part, people are very self-centered. They don't mean to ignore my needs, they just get consumed with their own stuff. And let's face it, understanding all we do to keep our CFers healthy. The treatments, the meds, the doctor's appointments, the hospitalizations, etc... its beyond understanding.

I think the thing that upset me the most was that my friends would look at my normal looking kid and I could feel them rolling their eyes and practically say, "she looks normal, she must be normal, this is what you got, now accept it and get on with it."

I've found the vast majority of my support from people in similar situations. And my husband. In the beginning there was great support from some of my friends, but after awhile it seemed to get old for them, while I was still hurting. It has definitely left a rift in many of my relationships.
 
M

Mommafirst

Guest
I had a really hard time with this in the beginning, I most definitely lost some friends along the way. I've realized that for the most part, people are very self-centered. They don't mean to ignore my needs, they just get consumed with their own stuff. And let's face it, understanding all we do to keep our CFers healthy. The treatments, the meds, the doctor's appointments, the hospitalizations, etc... its beyond understanding.

I think the thing that upset me the most was that my friends would look at my normal looking kid and I could feel them rolling their eyes and practically say, "she looks normal, she must be normal, this is what you got, now accept it and get on with it."

I've found the vast majority of my support from people in similar situations. And my husband. In the beginning there was great support from some of my friends, but after awhile it seemed to get old for them, while I was still hurting. It has definitely left a rift in many of my relationships.
 
M

Mommafirst

Guest
I had a really hard time with this in the beginning, I most definitely lost some friends along the way. I've realized that for the most part, people are very self-centered. They don't mean to ignore my needs, they just get consumed with their own stuff. And let's face it, understanding all we do to keep our CFers healthy. The treatments, the meds, the doctor's appointments, the hospitalizations, etc... its beyond understanding.

I think the thing that upset me the most was that my friends would look at my normal looking kid and I could feel them rolling their eyes and practically say, "she looks normal, she must be normal, this is what you got, now accept it and get on with it."

I've found the vast majority of my support from people in similar situations. And my husband. In the beginning there was great support from some of my friends, but after awhile it seemed to get old for them, while I was still hurting. It has definitely left a rift in many of my relationships.
 
M

Mommafirst

Guest
I had a really hard time with this in the beginning, I most definitely lost some friends along the way. I've realized that for the most part, people are very self-centered. They don't mean to ignore my needs, they just get consumed with their own stuff. And let's face it, understanding all we do to keep our CFers healthy. The treatments, the meds, the doctor's appointments, the hospitalizations, etc... its beyond understanding.
<br />
<br />I think the thing that upset me the most was that my friends would look at my normal looking kid and I could feel them rolling their eyes and practically say, "she looks normal, she must be normal, this is what you got, now accept it and get on with it."
<br />
<br />I've found the vast majority of my support from people in similar situations. And my husband. In the beginning there was great support from some of my friends, but after awhile it seemed to get old for them, while I was still hurting. It has definitely left a rift in many of my relationships.
 
B

brewz2

Guest
Well, I have one best friend, and she truly is the best! She'll always be there for me, but my biggest support system definitely comes from my family - mom, dad and sister - they will check in on the kids about every other day. What I've realized when it comes to other people (i.e. acquaintances) is that they're just too busy with their daily lives, to remember, or even understand what we go through. But one point I wanted to make is that I've notice that a LOT of people just don't know how to bring the subject up to me. I think they're scared how I may react (crying or get upset) so I tend to try and add in a blurb about the kids and let them know how they're doing, and try to be up front about it and let them feel, or realize that it's ok to ask me about it. I guess the more comfortable I am with talking about, the more they'll ask questions. I think acquaintances, and people you haven't seen for a while can get away with that kind of scenerio - but best friends have no excuse! Maybe it's time to address your feelings with her.
 
B

brewz2

Guest
Well, I have one best friend, and she truly is the best! She'll always be there for me, but my biggest support system definitely comes from my family - mom, dad and sister - they will check in on the kids about every other day. What I've realized when it comes to other people (i.e. acquaintances) is that they're just too busy with their daily lives, to remember, or even understand what we go through. But one point I wanted to make is that I've notice that a LOT of people just don't know how to bring the subject up to me. I think they're scared how I may react (crying or get upset) so I tend to try and add in a blurb about the kids and let them know how they're doing, and try to be up front about it and let them feel, or realize that it's ok to ask me about it. I guess the more comfortable I am with talking about, the more they'll ask questions. I think acquaintances, and people you haven't seen for a while can get away with that kind of scenerio - but best friends have no excuse! Maybe it's time to address your feelings with her.
 
B

brewz2

Guest
Well, I have one best friend, and she truly is the best! She'll always be there for me, but my biggest support system definitely comes from my family - mom, dad and sister - they will check in on the kids about every other day. What I've realized when it comes to other people (i.e. acquaintances) is that they're just too busy with their daily lives, to remember, or even understand what we go through. But one point I wanted to make is that I've notice that a LOT of people just don't know how to bring the subject up to me. I think they're scared how I may react (crying or get upset) so I tend to try and add in a blurb about the kids and let them know how they're doing, and try to be up front about it and let them feel, or realize that it's ok to ask me about it. I guess the more comfortable I am with talking about, the more they'll ask questions. I think acquaintances, and people you haven't seen for a while can get away with that kind of scenerio - but best friends have no excuse! Maybe it's time to address your feelings with her.
 
B

brewz2

Guest
Well, I have one best friend, and she truly is the best! She'll always be there for me, but my biggest support system definitely comes from my family - mom, dad and sister - they will check in on the kids about every other day. What I've realized when it comes to other people (i.e. acquaintances) is that they're just too busy with their daily lives, to remember, or even understand what we go through. But one point I wanted to make is that I've notice that a LOT of people just don't know how to bring the subject up to me. I think they're scared how I may react (crying or get upset) so I tend to try and add in a blurb about the kids and let them know how they're doing, and try to be up front about it and let them feel, or realize that it's ok to ask me about it. I guess the more comfortable I am with talking about, the more they'll ask questions. I think acquaintances, and people you haven't seen for a while can get away with that kind of scenerio - but best friends have no excuse! Maybe it's time to address your feelings with her.
 
B

brewz2

Guest
Well, I have one best friend, and she truly is the best! She'll always be there for me, but my biggest support system definitely comes from my family - mom, dad and sister - they will check in on the kids about every other day. What I've realized when it comes to other people (i.e. acquaintances) is that they're just too busy with their daily lives, to remember, or even understand what we go through. But one point I wanted to make is that I've notice that a LOT of people just don't know how to bring the subject up to me. I think they're scared how I may react (crying or get upset) so I tend to try and add in a blurb about the kids and let them know how they're doing, and try to be up front about it and let them feel, or realize that it's ok to ask me about it. I guess the more comfortable I am with talking about, the more they'll ask questions. I think acquaintances, and people you haven't seen for a while can get away with that kind of scenerio - but best friends have no excuse! Maybe it's time to address your feelings with her.
 
P

pjspiegle

New member
To answer your questions, yes I have loss friends after my sons diagnosis. I lost them for several reasons, little to no understanding, frustration, ignorance, etc. on their part. I lost one freind that was suppose to be my "best" friend because she was offended that I would not allow her to smoke around Nathan or hold him if she smelt like smoke. This confounded me because she did not smoke around her own kids and I never allowed her to smoke around my kids prior to the diagnosis. I was not judging her btu that is how she preceived it.

I have found the most support from my mother and immediate family and right here at this site. It is amazing how supportive the people here are and how much more they seem to care then people who are suppose to be our friends and actually know me. I really feel like I have a family here even though I have not met anyone in person as of yet.

Join the club. I am not sure that I have really met a family that did not loose friends once a child was diagnosed with CF. It shouldn't surprise us since I have known CFers that come from families that divorced over CF because either the mother or father couldn't handle it and the many CFers in foster care because of their diagnosis.

Sad but reality I guess.
 
P

pjspiegle

New member
To answer your questions, yes I have loss friends after my sons diagnosis. I lost them for several reasons, little to no understanding, frustration, ignorance, etc. on their part. I lost one freind that was suppose to be my "best" friend because she was offended that I would not allow her to smoke around Nathan or hold him if she smelt like smoke. This confounded me because she did not smoke around her own kids and I never allowed her to smoke around my kids prior to the diagnosis. I was not judging her btu that is how she preceived it.

I have found the most support from my mother and immediate family and right here at this site. It is amazing how supportive the people here are and how much more they seem to care then people who are suppose to be our friends and actually know me. I really feel like I have a family here even though I have not met anyone in person as of yet.

Join the club. I am not sure that I have really met a family that did not loose friends once a child was diagnosed with CF. It shouldn't surprise us since I have known CFers that come from families that divorced over CF because either the mother or father couldn't handle it and the many CFers in foster care because of their diagnosis.

Sad but reality I guess.
 
P

pjspiegle

New member
To answer your questions, yes I have loss friends after my sons diagnosis. I lost them for several reasons, little to no understanding, frustration, ignorance, etc. on their part. I lost one freind that was suppose to be my "best" friend because she was offended that I would not allow her to smoke around Nathan or hold him if she smelt like smoke. This confounded me because she did not smoke around her own kids and I never allowed her to smoke around my kids prior to the diagnosis. I was not judging her btu that is how she preceived it.

I have found the most support from my mother and immediate family and right here at this site. It is amazing how supportive the people here are and how much more they seem to care then people who are suppose to be our friends and actually know me. I really feel like I have a family here even though I have not met anyone in person as of yet.

Join the club. I am not sure that I have really met a family that did not loose friends once a child was diagnosed with CF. It shouldn't surprise us since I have known CFers that come from families that divorced over CF because either the mother or father couldn't handle it and the many CFers in foster care because of their diagnosis.

Sad but reality I guess.
 
P

pjspiegle

New member
To answer your questions, yes I have loss friends after my sons diagnosis. I lost them for several reasons, little to no understanding, frustration, ignorance, etc. on their part. I lost one freind that was suppose to be my "best" friend because she was offended that I would not allow her to smoke around Nathan or hold him if she smelt like smoke. This confounded me because she did not smoke around her own kids and I never allowed her to smoke around my kids prior to the diagnosis. I was not judging her btu that is how she preceived it.

I have found the most support from my mother and immediate family and right here at this site. It is amazing how supportive the people here are and how much more they seem to care then people who are suppose to be our friends and actually know me. I really feel like I have a family here even though I have not met anyone in person as of yet.

Join the club. I am not sure that I have really met a family that did not loose friends once a child was diagnosed with CF. It shouldn't surprise us since I have known CFers that come from families that divorced over CF because either the mother or father couldn't handle it and the many CFers in foster care because of their diagnosis.

Sad but reality I guess.
 
P

pjspiegle

New member
To answer your questions, yes I have loss friends after my sons diagnosis. I lost them for several reasons, little to no understanding, frustration, ignorance, etc. on their part. I lost one freind that was suppose to be my "best" friend because she was offended that I would not allow her to smoke around Nathan or hold him if she smelt like smoke. This confounded me because she did not smoke around her own kids and I never allowed her to smoke around my kids prior to the diagnosis. I was not judging her btu that is how she preceived it.
<br />
<br />I have found the most support from my mother and immediate family and right here at this site. It is amazing how supportive the people here are and how much more they seem to care then people who are suppose to be our friends and actually know me. I really feel like I have a family here even though I have not met anyone in person as of yet.
<br />
<br />Join the club. I am not sure that I have really met a family that did not loose friends once a child was diagnosed with CF. It shouldn't surprise us since I have known CFers that come from families that divorced over CF because either the mother or father couldn't handle it and the many CFers in foster care because of their diagnosis.
<br />
<br />Sad but reality I guess.
 
T

tammykrumrey

Guest
Well, first I have to wonder if your friends are parents themselves? I think that if you are really young still and most your friends are not married w/ children, they probably don't get it yet. I noticed this somewhat with my sister when my nephew was born with CF. She was only 20 years old when he was born, and the first in her 'group' to have children. They didn't understand the whole thing.

My friends were pretty familiar with CF when my girls were born because I didn't have children until about seven years after my sister started her family. I was 29 and three of my best friends were pregnant at the same time as I was. They were great support, and one of my closest friends even cried with me when I told her the news.

I feel like our friends and people we do business with (we are business owners) are probably more supportive than some of our family members. We just held a golf tournement last Friday (our 6th year) in honor of Dalton, Kayla and Hannah (all money goes to the CFF)...and we had 148 golfers and raised over $29,000.00! 28 more golfers and seven thousand dollars more than last year! That is definatly support<img src="i/expressions/face-icon-small-smile.gif" border="0">

I have a few cousins (one who works for me and one who used to) who get under my skin because when there little girls were babies they were both having issues and the doctor suggested sweat testing to rule out CF b/c of mine and my sisters kids. They were both so scared and in tears coming in my office all worked up and worried. BUT, when everything comes back fine, they forget about how scared they were....neither one EVER attend a single CFF event nor donate a single penny. I even ask for people to just help out the day of some of our events-doesn't cost them a single cent, but nope. They can care less now that their little ones are all healthy!
 
T

tammykrumrey

Guest
Well, first I have to wonder if your friends are parents themselves? I think that if you are really young still and most your friends are not married w/ children, they probably don't get it yet. I noticed this somewhat with my sister when my nephew was born with CF. She was only 20 years old when he was born, and the first in her 'group' to have children. They didn't understand the whole thing.

My friends were pretty familiar with CF when my girls were born because I didn't have children until about seven years after my sister started her family. I was 29 and three of my best friends were pregnant at the same time as I was. They were great support, and one of my closest friends even cried with me when I told her the news.

I feel like our friends and people we do business with (we are business owners) are probably more supportive than some of our family members. We just held a golf tournement last Friday (our 6th year) in honor of Dalton, Kayla and Hannah (all money goes to the CFF)...and we had 148 golfers and raised over $29,000.00! 28 more golfers and seven thousand dollars more than last year! That is definatly support<img src="i/expressions/face-icon-small-smile.gif" border="0">

I have a few cousins (one who works for me and one who used to) who get under my skin because when there little girls were babies they were both having issues and the doctor suggested sweat testing to rule out CF b/c of mine and my sisters kids. They were both so scared and in tears coming in my office all worked up and worried. BUT, when everything comes back fine, they forget about how scared they were....neither one EVER attend a single CFF event nor donate a single penny. I even ask for people to just help out the day of some of our events-doesn't cost them a single cent, but nope. They can care less now that their little ones are all healthy!
 
T

tammykrumrey

Guest
Well, first I have to wonder if your friends are parents themselves? I think that if you are really young still and most your friends are not married w/ children, they probably don't get it yet. I noticed this somewhat with my sister when my nephew was born with CF. She was only 20 years old when he was born, and the first in her 'group' to have children. They didn't understand the whole thing.

My friends were pretty familiar with CF when my girls were born because I didn't have children until about seven years after my sister started her family. I was 29 and three of my best friends were pregnant at the same time as I was. They were great support, and one of my closest friends even cried with me when I told her the news.

I feel like our friends and people we do business with (we are business owners) are probably more supportive than some of our family members. We just held a golf tournement last Friday (our 6th year) in honor of Dalton, Kayla and Hannah (all money goes to the CFF)...and we had 148 golfers and raised over $29,000.00! 28 more golfers and seven thousand dollars more than last year! That is definatly support<img src="i/expressions/face-icon-small-smile.gif" border="0">

I have a few cousins (one who works for me and one who used to) who get under my skin because when there little girls were babies they were both having issues and the doctor suggested sweat testing to rule out CF b/c of mine and my sisters kids. They were both so scared and in tears coming in my office all worked up and worried. BUT, when everything comes back fine, they forget about how scared they were....neither one EVER attend a single CFF event nor donate a single penny. I even ask for people to just help out the day of some of our events-doesn't cost them a single cent, but nope. They can care less now that their little ones are all healthy!
 
T

tammykrumrey

Guest
Well, first I have to wonder if your friends are parents themselves? I think that if you are really young still and most your friends are not married w/ children, they probably don't get it yet. I noticed this somewhat with my sister when my nephew was born with CF. She was only 20 years old when he was born, and the first in her 'group' to have children. They didn't understand the whole thing.

My friends were pretty familiar with CF when my girls were born because I didn't have children until about seven years after my sister started her family. I was 29 and three of my best friends were pregnant at the same time as I was. They were great support, and one of my closest friends even cried with me when I told her the news.

I feel like our friends and people we do business with (we are business owners) are probably more supportive than some of our family members. We just held a golf tournement last Friday (our 6th year) in honor of Dalton, Kayla and Hannah (all money goes to the CFF)...and we had 148 golfers and raised over $29,000.00! 28 more golfers and seven thousand dollars more than last year! That is definatly support<img src="i/expressions/face-icon-small-smile.gif" border="0">

I have a few cousins (one who works for me and one who used to) who get under my skin because when there little girls were babies they were both having issues and the doctor suggested sweat testing to rule out CF b/c of mine and my sisters kids. They were both so scared and in tears coming in my office all worked up and worried. BUT, when everything comes back fine, they forget about how scared they were....neither one EVER attend a single CFF event nor donate a single penny. I even ask for people to just help out the day of some of our events-doesn't cost them a single cent, but nope. They can care less now that their little ones are all healthy!
 
T

tammykrumrey

Guest
Well, first I have to wonder if your friends are parents themselves? I think that if you are really young still and most your friends are not married w/ children, they probably don't get it yet. I noticed this somewhat with my sister when my nephew was born with CF. She was only 20 years old when he was born, and the first in her 'group' to have children. They didn't understand the whole thing.
<br />
<br />My friends were pretty familiar with CF when my girls were born because I didn't have children until about seven years after my sister started her family. I was 29 and three of my best friends were pregnant at the same time as I was. They were great support, and one of my closest friends even cried with me when I told her the news.
<br />
<br />I feel like our friends and people we do business with (we are business owners) are probably more supportive than some of our family members. We just held a golf tournement last Friday (our 6th year) in honor of Dalton, Kayla and Hannah (all money goes to the CFF)...and we had 148 golfers and raised over $29,000.00! 28 more golfers and seven thousand dollars more than last year! That is definatly support<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I have a few cousins (one who works for me and one who used to) who get under my skin because when there little girls were babies they were both having issues and the doctor suggested sweat testing to rule out CF b/c of mine and my sisters kids. They were both so scared and in tears coming in my office all worked up and worried. BUT, when everything comes back fine, they forget about how scared they were....neither one EVER attend a single CFF event nor donate a single penny. I even ask for people to just help out the day of some of our events-doesn't cost them a single cent, but nope. They can care less now that their little ones are all healthy!
<br />
<br />
 
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