Newbie memeber....Hello

Megmolly

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">
Thank you so much Piper for your insight. It helps me believe that I am navigating in the right direction. My husband and I do not see eye to eye on this topic. I feel that if we set her up with all the support she will need and then let her go she will have to do it on her own. We are looking into Stonybrook University. They have a CF center. We do go to the peds section on Columbia we have been there for over 10yrs. They have been vocal in some of the other colleges she has been interested in. For example they perfer Stonybrook over Syracus. Go Figure. I had told Maureen that we would keep in mind their advice but we would not elimanate schools on their say so. I felt that this gave her a more normal feeling. How many other students are being told where to go to school by a doctor.....
I am so happy that you mentioned your feelings...I know my daughter in very angry. She has the CF, Crohn's, CFRD & RA and it is always something that brings down her energy level or interferes with something she wants etc.... How could you not be angry. I try very hard to break through the anger but then I hit the brick wall and can't continue so I let her stew.

Thanks Again
Meg
 

Megmolly

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">
Thank you so much Piper for your insight. It helps me believe that I am navigating in the right direction. My husband and I do not see eye to eye on this topic. I feel that if we set her up with all the support she will need and then let her go she will have to do it on her own. We are looking into Stonybrook University. They have a CF center. We do go to the peds section on Columbia we have been there for over 10yrs. They have been vocal in some of the other colleges she has been interested in. For example they perfer Stonybrook over Syracus. Go Figure. I had told Maureen that we would keep in mind their advice but we would not elimanate schools on their say so. I felt that this gave her a more normal feeling. How many other students are being told where to go to school by a doctor.....
I am so happy that you mentioned your feelings...I know my daughter in very angry. She has the CF, Crohn's, CFRD & RA and it is always something that brings down her energy level or interferes with something she wants etc.... How could you not be angry. I try very hard to break through the anger but then I hit the brick wall and can't continue so I let her stew.

Thanks Again
Meg
 

Megmolly

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">
Thank you so much Piper for your insight. It helps me believe that I am navigating in the right direction. My husband and I do not see eye to eye on this topic. I feel that if we set her up with all the support she will need and then let her go she will have to do it on her own. We are looking into Stonybrook University. They have a CF center. We do go to the peds section on Columbia we have been there for over 10yrs. They have been vocal in some of the other colleges she has been interested in. For example they perfer Stonybrook over Syracus. Go Figure. I had told Maureen that we would keep in mind their advice but we would not elimanate schools on their say so. I felt that this gave her a more normal feeling. How many other students are being told where to go to school by a doctor.....
I am so happy that you mentioned your feelings...I know my daughter in very angry. She has the CF, Crohn's, CFRD & RA and it is always something that brings down her energy level or interferes with something she wants etc.... How could you not be angry. I try very hard to break through the anger but then I hit the brick wall and can't continue so I let her stew.

Thanks Again
Meg
 

Megmolly

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">
Thank you so much Piper for your insight. It helps me believe that I am navigating in the right direction. My husband and I do not see eye to eye on this topic. I feel that if we set her up with all the support she will need and then let her go she will have to do it on her own. We are looking into Stonybrook University. They have a CF center. We do go to the peds section on Columbia we have been there for over 10yrs. They have been vocal in some of the other colleges she has been interested in. For example they perfer Stonybrook over Syracus. Go Figure. I had told Maureen that we would keep in mind their advice but we would not elimanate schools on their say so. I felt that this gave her a more normal feeling. How many other students are being told where to go to school by a doctor.....
I am so happy that you mentioned your feelings...I know my daughter in very angry. She has the CF, Crohn's, CFRD & RA and it is always something that brings down her energy level or interferes with something she wants etc.... How could you not be angry. I try very hard to break through the anger but then I hit the brick wall and can't continue so I let her stew.

Thanks Again
Meg
 

Megmolly

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />Thank you so much Piper for your insight. It helps me believe that I am navigating in the right direction. My husband and I do not see eye to eye on this topic. I feel that if we set her up with all the support she will need and then let her go she will have to do it on her own. We are looking into Stonybrook University. They have a CF center. We do go to the peds section on Columbia we have been there for over 10yrs. They have been vocal in some of the other colleges she has been interested in. For example they perfer Stonybrook over Syracus. Go Figure. I had told Maureen that we would keep in mind their advice but we would not elimanate schools on their say so. I felt that this gave her a more normal feeling. How many other students are being told where to go to school by a doctor.....
<br />I am so happy that you mentioned your feelings...I know my daughter in very angry. She has the CF, Crohn's, CFRD & RA and it is always something that brings down her energy level or interferes with something she wants etc.... How could you not be angry. I try very hard to break through the anger but then I hit the brick wall and can't continue so I let her stew.
<br />
<br />Thanks Again
<br />Meg
 

NYCLawGirl

New member
To be honest you sound like a CF dream parent (not kidding). I was pretty angry too, though certainly not at my parents. I just really like to push myself and have high goals, so I felt totally stifled by CF. I got the same thing from some of my docs - they were really concerned about Atlanta being so humid and about me being so far away from home. All I could think of the whole time is "most families would be SO happy to have a child who is putting herself out there and WANTS to go to school and get a good education. Why is it that just b/c I have CF people are trying to hold me back?" And then I got angry and started avoiding treatments b/c it seemed like the easiest way to rid my life of CF was to ignore it.

My parents were amazing. They listened to the doctors, but they managed to toe an incredible line in that they were concerned about my health (insisted on coming to Atl with me and meeting my new medical team, made arrangements to help me adjust to my new CF center, etc), without insisting that my CF dictate where and how I could go to school. For example, my mom helped me contact the disabilities office at Emory's campus to make some special arrangements for me to have a car my first year and other things, but she allowed me to go ahead and share a double dorm room (it was important to me). You shound like you are trying to find the same sort of balance, and your daughter is so lucky about that! Believe me, she will realize (and probably already does) through your actions that you are in her corner about wanting to have a "normal" life, while still of course wanting her to be as healthy as possible. For me this was a huge motivator in realizing that I had to make smart, conscious CHOICES about when to put CF first (treatments, meds, doctors appt) and when to put LIFE first (allowing myself the freedom to push myself a little, have goals and a social life, etc). My parents remain my role models in this regard, even though neither of them have CF.

Your daughter sounds like she is bright and has some great school options. She also sounds like she has a great support system. I'm guessing that both of these factors will combine to give you a very well-adjusted and successful CFer sometime down the road...even if all the changes don't happen overnight.
 

NYCLawGirl

New member
To be honest you sound like a CF dream parent (not kidding). I was pretty angry too, though certainly not at my parents. I just really like to push myself and have high goals, so I felt totally stifled by CF. I got the same thing from some of my docs - they were really concerned about Atlanta being so humid and about me being so far away from home. All I could think of the whole time is "most families would be SO happy to have a child who is putting herself out there and WANTS to go to school and get a good education. Why is it that just b/c I have CF people are trying to hold me back?" And then I got angry and started avoiding treatments b/c it seemed like the easiest way to rid my life of CF was to ignore it.

My parents were amazing. They listened to the doctors, but they managed to toe an incredible line in that they were concerned about my health (insisted on coming to Atl with me and meeting my new medical team, made arrangements to help me adjust to my new CF center, etc), without insisting that my CF dictate where and how I could go to school. For example, my mom helped me contact the disabilities office at Emory's campus to make some special arrangements for me to have a car my first year and other things, but she allowed me to go ahead and share a double dorm room (it was important to me). You shound like you are trying to find the same sort of balance, and your daughter is so lucky about that! Believe me, she will realize (and probably already does) through your actions that you are in her corner about wanting to have a "normal" life, while still of course wanting her to be as healthy as possible. For me this was a huge motivator in realizing that I had to make smart, conscious CHOICES about when to put CF first (treatments, meds, doctors appt) and when to put LIFE first (allowing myself the freedom to push myself a little, have goals and a social life, etc). My parents remain my role models in this regard, even though neither of them have CF.

Your daughter sounds like she is bright and has some great school options. She also sounds like she has a great support system. I'm guessing that both of these factors will combine to give you a very well-adjusted and successful CFer sometime down the road...even if all the changes don't happen overnight.
 

NYCLawGirl

New member
To be honest you sound like a CF dream parent (not kidding). I was pretty angry too, though certainly not at my parents. I just really like to push myself and have high goals, so I felt totally stifled by CF. I got the same thing from some of my docs - they were really concerned about Atlanta being so humid and about me being so far away from home. All I could think of the whole time is "most families would be SO happy to have a child who is putting herself out there and WANTS to go to school and get a good education. Why is it that just b/c I have CF people are trying to hold me back?" And then I got angry and started avoiding treatments b/c it seemed like the easiest way to rid my life of CF was to ignore it.

My parents were amazing. They listened to the doctors, but they managed to toe an incredible line in that they were concerned about my health (insisted on coming to Atl with me and meeting my new medical team, made arrangements to help me adjust to my new CF center, etc), without insisting that my CF dictate where and how I could go to school. For example, my mom helped me contact the disabilities office at Emory's campus to make some special arrangements for me to have a car my first year and other things, but she allowed me to go ahead and share a double dorm room (it was important to me). You shound like you are trying to find the same sort of balance, and your daughter is so lucky about that! Believe me, she will realize (and probably already does) through your actions that you are in her corner about wanting to have a "normal" life, while still of course wanting her to be as healthy as possible. For me this was a huge motivator in realizing that I had to make smart, conscious CHOICES about when to put CF first (treatments, meds, doctors appt) and when to put LIFE first (allowing myself the freedom to push myself a little, have goals and a social life, etc). My parents remain my role models in this regard, even though neither of them have CF.

Your daughter sounds like she is bright and has some great school options. She also sounds like she has a great support system. I'm guessing that both of these factors will combine to give you a very well-adjusted and successful CFer sometime down the road...even if all the changes don't happen overnight.
 

NYCLawGirl

New member
To be honest you sound like a CF dream parent (not kidding). I was pretty angry too, though certainly not at my parents. I just really like to push myself and have high goals, so I felt totally stifled by CF. I got the same thing from some of my docs - they were really concerned about Atlanta being so humid and about me being so far away from home. All I could think of the whole time is "most families would be SO happy to have a child who is putting herself out there and WANTS to go to school and get a good education. Why is it that just b/c I have CF people are trying to hold me back?" And then I got angry and started avoiding treatments b/c it seemed like the easiest way to rid my life of CF was to ignore it.

My parents were amazing. They listened to the doctors, but they managed to toe an incredible line in that they were concerned about my health (insisted on coming to Atl with me and meeting my new medical team, made arrangements to help me adjust to my new CF center, etc), without insisting that my CF dictate where and how I could go to school. For example, my mom helped me contact the disabilities office at Emory's campus to make some special arrangements for me to have a car my first year and other things, but she allowed me to go ahead and share a double dorm room (it was important to me). You shound like you are trying to find the same sort of balance, and your daughter is so lucky about that! Believe me, she will realize (and probably already does) through your actions that you are in her corner about wanting to have a "normal" life, while still of course wanting her to be as healthy as possible. For me this was a huge motivator in realizing that I had to make smart, conscious CHOICES about when to put CF first (treatments, meds, doctors appt) and when to put LIFE first (allowing myself the freedom to push myself a little, have goals and a social life, etc). My parents remain my role models in this regard, even though neither of them have CF.

Your daughter sounds like she is bright and has some great school options. She also sounds like she has a great support system. I'm guessing that both of these factors will combine to give you a very well-adjusted and successful CFer sometime down the road...even if all the changes don't happen overnight.
 

NYCLawGirl

New member
To be honest you sound like a CF dream parent (not kidding). I was pretty angry too, though certainly not at my parents. I just really like to push myself and have high goals, so I felt totally stifled by CF. I got the same thing from some of my docs - they were really concerned about Atlanta being so humid and about me being so far away from home. All I could think of the whole time is "most families would be SO happy to have a child who is putting herself out there and WANTS to go to school and get a good education. Why is it that just b/c I have CF people are trying to hold me back?" And then I got angry and started avoiding treatments b/c it seemed like the easiest way to rid my life of CF was to ignore it.
<br />
<br />My parents were amazing. They listened to the doctors, but they managed to toe an incredible line in that they were concerned about my health (insisted on coming to Atl with me and meeting my new medical team, made arrangements to help me adjust to my new CF center, etc), without insisting that my CF dictate where and how I could go to school. For example, my mom helped me contact the disabilities office at Emory's campus to make some special arrangements for me to have a car my first year and other things, but she allowed me to go ahead and share a double dorm room (it was important to me). You shound like you are trying to find the same sort of balance, and your daughter is so lucky about that! Believe me, she will realize (and probably already does) through your actions that you are in her corner about wanting to have a "normal" life, while still of course wanting her to be as healthy as possible. For me this was a huge motivator in realizing that I had to make smart, conscious CHOICES about when to put CF first (treatments, meds, doctors appt) and when to put LIFE first (allowing myself the freedom to push myself a little, have goals and a social life, etc). My parents remain my role models in this regard, even though neither of them have CF.
<br />
<br />Your daughter sounds like she is bright and has some great school options. She also sounds like she has a great support system. I'm guessing that both of these factors will combine to give you a very well-adjusted and successful CFer sometime down the road...even if all the changes don't happen overnight.
 

JORDYSMOM

New member
Hi Meg. Welcome. My CFer is 18, and he is not fully compliant either. It's a tough age. It's so hard to be the parent of a "grown" child. I try not to nag or hound him about his treatments, but there are times when I can't keep my mouth shut.

Saturday for instance, we were going out to eat, and he's coughing, and says, "I feel like I have liquid in my lungs." My response was "Well maybe you should do a treatment or two, and you might actually be able to breathe!" I mean, he tells me he can't breathe, but he isn't going to strap on that vest, or hook up a neb. It's sooooo frustrating!

I'm glad you found us here. You are definitely not alone in this. I read a lot from the CFers in their 20's and 30's, and it seems a lot of them weren't exactly compliant in their late teens and early 20's. I suppose it's just the way it is. We have to let them make their own choices. Ugh!

Come here and vent anytime. I look forward to getting to know you better.

Stacey
 

JORDYSMOM

New member
Hi Meg. Welcome. My CFer is 18, and he is not fully compliant either. It's a tough age. It's so hard to be the parent of a "grown" child. I try not to nag or hound him about his treatments, but there are times when I can't keep my mouth shut.

Saturday for instance, we were going out to eat, and he's coughing, and says, "I feel like I have liquid in my lungs." My response was "Well maybe you should do a treatment or two, and you might actually be able to breathe!" I mean, he tells me he can't breathe, but he isn't going to strap on that vest, or hook up a neb. It's sooooo frustrating!

I'm glad you found us here. You are definitely not alone in this. I read a lot from the CFers in their 20's and 30's, and it seems a lot of them weren't exactly compliant in their late teens and early 20's. I suppose it's just the way it is. We have to let them make their own choices. Ugh!

Come here and vent anytime. I look forward to getting to know you better.

Stacey
 

JORDYSMOM

New member
Hi Meg. Welcome. My CFer is 18, and he is not fully compliant either. It's a tough age. It's so hard to be the parent of a "grown" child. I try not to nag or hound him about his treatments, but there are times when I can't keep my mouth shut.

Saturday for instance, we were going out to eat, and he's coughing, and says, "I feel like I have liquid in my lungs." My response was "Well maybe you should do a treatment or two, and you might actually be able to breathe!" I mean, he tells me he can't breathe, but he isn't going to strap on that vest, or hook up a neb. It's sooooo frustrating!

I'm glad you found us here. You are definitely not alone in this. I read a lot from the CFers in their 20's and 30's, and it seems a lot of them weren't exactly compliant in their late teens and early 20's. I suppose it's just the way it is. We have to let them make their own choices. Ugh!

Come here and vent anytime. I look forward to getting to know you better.

Stacey
 

JORDYSMOM

New member
Hi Meg. Welcome. My CFer is 18, and he is not fully compliant either. It's a tough age. It's so hard to be the parent of a "grown" child. I try not to nag or hound him about his treatments, but there are times when I can't keep my mouth shut.

Saturday for instance, we were going out to eat, and he's coughing, and says, "I feel like I have liquid in my lungs." My response was "Well maybe you should do a treatment or two, and you might actually be able to breathe!" I mean, he tells me he can't breathe, but he isn't going to strap on that vest, or hook up a neb. It's sooooo frustrating!

I'm glad you found us here. You are definitely not alone in this. I read a lot from the CFers in their 20's and 30's, and it seems a lot of them weren't exactly compliant in their late teens and early 20's. I suppose it's just the way it is. We have to let them make their own choices. Ugh!

Come here and vent anytime. I look forward to getting to know you better.

Stacey
 

JORDYSMOM

New member
Hi Meg. Welcome. My CFer is 18, and he is not fully compliant either. It's a tough age. It's so hard to be the parent of a "grown" child. I try not to nag or hound him about his treatments, but there are times when I can't keep my mouth shut.
<br />
<br />Saturday for instance, we were going out to eat, and he's coughing, and says, "I feel like I have liquid in my lungs." My response was "Well maybe you should do a treatment or two, and you might actually be able to breathe!" I mean, he tells me he can't breathe, but he isn't going to strap on that vest, or hook up a neb. It's sooooo frustrating!
<br />
<br />I'm glad you found us here. You are definitely not alone in this. I read a lot from the CFers in their 20's and 30's, and it seems a lot of them weren't exactly compliant in their late teens and early 20's. I suppose it's just the way it is. We have to let them make their own choices. Ugh!
<br />
<br />Come here and vent anytime. I look forward to getting to know you better.
<br />
<br />Stacey
 
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