Need help overcoming guilt...

A

Alyssa

New member
Hey Emily... too funny... because I was updating my Great Strides fund raising letter just a few hours ago thinking something along the lines of "I hope people still want to donate money, even though my kids are doing well right now"..... I think part of what you are saying is similar to what I too was feeling.... wanting to help support finding a cure etc even though our kids are not severely impacted yet.

But having said that... I think the larger issue is with being overly concerned about what others think of you......you might find it helpful to stop worrying so much about what other people think, feel or say about you (I know, easier said than done, but .....) This is your life, and concerns you, your daughter and your husband. You know you are doing the right thing on all accounts... just keep doing what you are doing and don't concern yourself with what other people think!

This quote came to mind as soon as I read your post... I'm hoping that you may find it helpful.....

<b>No one can make you feel inferior without your consent</b>..... <i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Hey Emily... too funny... because I was updating my Great Strides fund raising letter just a few hours ago thinking something along the lines of "I hope people still want to donate money, even though my kids are doing well right now"..... I think part of what you are saying is similar to what I too was feeling.... wanting to help support finding a cure etc even though our kids are not severely impacted yet.

But having said that... I think the larger issue is with being overly concerned about what others think of you......you might find it helpful to stop worrying so much about what other people think, feel or say about you (I know, easier said than done, but .....) This is your life, and concerns you, your daughter and your husband. You know you are doing the right thing on all accounts... just keep doing what you are doing and don't concern yourself with what other people think!

This quote came to mind as soon as I read your post... I'm hoping that you may find it helpful.....

<b>No one can make you feel inferior without your consent</b>..... <i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Hey Emily... too funny... because I was updating my Great Strides fund raising letter just a few hours ago thinking something along the lines of "I hope people still want to donate money, even though my kids are doing well right now"..... I think part of what you are saying is similar to what I too was feeling.... wanting to help support finding a cure etc even though our kids are not severely impacted yet.

But having said that... I think the larger issue is with being overly concerned about what others think of you......you might find it helpful to stop worrying so much about what other people think, feel or say about you (I know, easier said than done, but .....) This is your life, and concerns you, your daughter and your husband. You know you are doing the right thing on all accounts... just keep doing what you are doing and don't concern yourself with what other people think!

This quote came to mind as soon as I read your post... I'm hoping that you may find it helpful.....

<b>No one can make you feel inferior without your consent</b>..... <i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Hey Emily... too funny... because I was updating my Great Strides fund raising letter just a few hours ago thinking something along the lines of "I hope people still want to donate money, even though my kids are doing well right now"..... I think part of what you are saying is similar to what I too was feeling.... wanting to help support finding a cure etc even though our kids are not severely impacted yet.

But having said that... I think the larger issue is with being overly concerned about what others think of you......you might find it helpful to stop worrying so much about what other people think, feel or say about you (I know, easier said than done, but .....) This is your life, and concerns you, your daughter and your husband. You know you are doing the right thing on all accounts... just keep doing what you are doing and don't concern yourself with what other people think!

This quote came to mind as soon as I read your post... I'm hoping that you may find it helpful.....

<b>No one can make you feel inferior without your consent</b>..... <i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Hey Emily... too funny... because I was updating my Great Strides fund raising letter just a few hours ago thinking something along the lines of "I hope people still want to donate money, even though my kids are doing well right now"..... I think part of what you are saying is similar to what I too was feeling.... wanting to help support finding a cure etc even though our kids are not severely impacted yet.

But having said that... I think the larger issue is with being overly concerned about what others think of you......you might find it helpful to stop worrying so much about what other people think, feel or say about you (I know, easier said than done, but .....) This is your life, and concerns you, your daughter and your husband. You know you are doing the right thing on all accounts... just keep doing what you are doing and don't concern yourself with what other people think!

This quote came to mind as soon as I read your post... I'm hoping that you may find it helpful.....

<b>No one can make you feel inferior without your consent</b>..... <i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Oh, and I just found this other one, when I went to make sure I had quoted her other saying correctly.... this too may apply here :)

<b>Do what you feel in your heart to be right - for you'll be criticized anyway. You'll be damned if you do, and damned if you don't.</b>...<i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Oh, and I just found this other one, when I went to make sure I had quoted her other saying correctly.... this too may apply here :)

<b>Do what you feel in your heart to be right - for you'll be criticized anyway. You'll be damned if you do, and damned if you don't.</b>...<i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Oh, and I just found this other one, when I went to make sure I had quoted her other saying correctly.... this too may apply here :)

<b>Do what you feel in your heart to be right - for you'll be criticized anyway. You'll be damned if you do, and damned if you don't.</b>...<i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Oh, and I just found this other one, when I went to make sure I had quoted her other saying correctly.... this too may apply here :)

<b>Do what you feel in your heart to be right - for you'll be criticized anyway. You'll be damned if you do, and damned if you don't.</b>...<i>Eleanor Roosevelt</i>
 
A

Alyssa

New member
Oh, and I just found this other one, when I went to make sure I had quoted her other saying correctly.... this too may apply here :)

<b>Do what you feel in your heart to be right - for you'll be criticized anyway. You'll be damned if you do, and damned if you don't.</b>...<i>Eleanor Roosevelt</i>
 
A

AbbysMama

New member
Alyssa, It is funny that you posted that quote. I was watching the Princess Diaries for what seems like the 100th time and the quote really hit home (Hector says it to Anne). I'm so guilty (guilty as charged!) of letting what others think affect what I do. I'm going to get my act together and start working on getting my ducks in a row so I can do what I need to do and want to do for CF research.

Education is going to be the key for family and friends. I'm just going to have to get a thick skin in the event anyone says anything negative about what we are doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lynsey, I hadn't thought about it as challenges, but you are exactly right. They are. We deal with a reality every day that most do not. Thanks for your insight.

NoExcuses, I should have NOEXCUSES for wanting to do something for CF research, especially if it might prevent my child from EVER having any symptoms related to CF. Thanks for your input. I appreciate it.

Rebecca, I like your ideas about a mini-walk and using the stories of other CFers. I also have to remember that if we make a video, that we can always put how blessed and fortunate we are, but there are others that need our help.

Thank you all who have replies thusfar! I appreciate it more than you know!
 
A

AbbysMama

New member
Alyssa, It is funny that you posted that quote. I was watching the Princess Diaries for what seems like the 100th time and the quote really hit home (Hector says it to Anne). I'm so guilty (guilty as charged!) of letting what others think affect what I do. I'm going to get my act together and start working on getting my ducks in a row so I can do what I need to do and want to do for CF research.

Education is going to be the key for family and friends. I'm just going to have to get a thick skin in the event anyone says anything negative about what we are doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lynsey, I hadn't thought about it as challenges, but you are exactly right. They are. We deal with a reality every day that most do not. Thanks for your insight.

NoExcuses, I should have NOEXCUSES for wanting to do something for CF research, especially if it might prevent my child from EVER having any symptoms related to CF. Thanks for your input. I appreciate it.

Rebecca, I like your ideas about a mini-walk and using the stories of other CFers. I also have to remember that if we make a video, that we can always put how blessed and fortunate we are, but there are others that need our help.

Thank you all who have replies thusfar! I appreciate it more than you know!
 
A

AbbysMama

New member
Alyssa, It is funny that you posted that quote. I was watching the Princess Diaries for what seems like the 100th time and the quote really hit home (Hector says it to Anne). I'm so guilty (guilty as charged!) of letting what others think affect what I do. I'm going to get my act together and start working on getting my ducks in a row so I can do what I need to do and want to do for CF research.

Education is going to be the key for family and friends. I'm just going to have to get a thick skin in the event anyone says anything negative about what we are doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lynsey, I hadn't thought about it as challenges, but you are exactly right. They are. We deal with a reality every day that most do not. Thanks for your insight.

NoExcuses, I should have NOEXCUSES for wanting to do something for CF research, especially if it might prevent my child from EVER having any symptoms related to CF. Thanks for your input. I appreciate it.

Rebecca, I like your ideas about a mini-walk and using the stories of other CFers. I also have to remember that if we make a video, that we can always put how blessed and fortunate we are, but there are others that need our help.

Thank you all who have replies thusfar! I appreciate it more than you know!
 
A

AbbysMama

New member
Alyssa, It is funny that you posted that quote. I was watching the Princess Diaries for what seems like the 100th time and the quote really hit home (Hector says it to Anne). I'm so guilty (guilty as charged!) of letting what others think affect what I do. I'm going to get my act together and start working on getting my ducks in a row so I can do what I need to do and want to do for CF research.

Education is going to be the key for family and friends. I'm just going to have to get a thick skin in the event anyone says anything negative about what we are doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lynsey, I hadn't thought about it as challenges, but you are exactly right. They are. We deal with a reality every day that most do not. Thanks for your insight.

NoExcuses, I should have NOEXCUSES for wanting to do something for CF research, especially if it might prevent my child from EVER having any symptoms related to CF. Thanks for your input. I appreciate it.

Rebecca, I like your ideas about a mini-walk and using the stories of other CFers. I also have to remember that if we make a video, that we can always put how blessed and fortunate we are, but there are others that need our help.

Thank you all who have replies thusfar! I appreciate it more than you know!
 
A

AbbysMama

New member
Alyssa, It is funny that you posted that quote. I was watching the Princess Diaries for what seems like the 100th time and the quote really hit home (Hector says it to Anne). I'm so guilty (guilty as charged!) of letting what others think affect what I do. I'm going to get my act together and start working on getting my ducks in a row so I can do what I need to do and want to do for CF research.

Education is going to be the key for family and friends. I'm just going to have to get a thick skin in the event anyone says anything negative about what we are doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lynsey, I hadn't thought about it as challenges, but you are exactly right. They are. We deal with a reality every day that most do not. Thanks for your insight.

NoExcuses, I should have NOEXCUSES for wanting to do something for CF research, especially if it might prevent my child from EVER having any symptoms related to CF. Thanks for your input. I appreciate it.

Rebecca, I like your ideas about a mini-walk and using the stories of other CFers. I also have to remember that if we make a video, that we can always put how blessed and fortunate we are, but there are others that need our help.

Thank you all who have replies thusfar! I appreciate it more than you know!
 
M

Mommafirst

Guest
Em,

I do know a lot of what you are describing here. Alyssa has done remarkably well. Up until her first hospitalization, I felt a lot like you did. But luckily, I think my family and friends got it with the hospital stay. They realize that a little bug can take them down quickly and EVERYTHING about good health and CF means preventative care. Of course, even the best preventative care may not be enough -- but we parents have to give our all.

In the first few months that Alyssa was on enzymes, I was pretty bad about giving them to her (because she is/was pancreatic sufficient) and I felt like it was such a waste of her time and energy. I worried about adding extra meds, the vest, etc. Then I realized, we have to keep her doing well for as long as humanly possible. And so she HAS to do all these treatments and meds. And if she's doing all these treatments and meds.... then her CF life is a CF life. Period.

Jenn (Weston's mom) said something a few days ago that has really stuck with me. She said that the treatments and meds we have today are a direct result of the moms of the last generation of CF kiddos and their hard fundraising work to get drugs like pulmozyme, hypertonic saline, etc. discovered. It is our obligation, to keep working, so that the NEXT generation of CF kiddos will have even more amazing options. And our kiddos will live long, productive lives.

I know its hard to hear.... but you BELONG here. Your daughter has CF. She is doing great and I hope, along with all the others around here that she continues to do well forever. But it doesn't change that she has CF. Period. If your family doesn't get that...well you can't force them to be less ignorant.

HUGS!!!

Heather
 
M

Mommafirst

Guest
Em,

I do know a lot of what you are describing here. Alyssa has done remarkably well. Up until her first hospitalization, I felt a lot like you did. But luckily, I think my family and friends got it with the hospital stay. They realize that a little bug can take them down quickly and EVERYTHING about good health and CF means preventative care. Of course, even the best preventative care may not be enough -- but we parents have to give our all.

In the first few months that Alyssa was on enzymes, I was pretty bad about giving them to her (because she is/was pancreatic sufficient) and I felt like it was such a waste of her time and energy. I worried about adding extra meds, the vest, etc. Then I realized, we have to keep her doing well for as long as humanly possible. And so she HAS to do all these treatments and meds. And if she's doing all these treatments and meds.... then her CF life is a CF life. Period.

Jenn (Weston's mom) said something a few days ago that has really stuck with me. She said that the treatments and meds we have today are a direct result of the moms of the last generation of CF kiddos and their hard fundraising work to get drugs like pulmozyme, hypertonic saline, etc. discovered. It is our obligation, to keep working, so that the NEXT generation of CF kiddos will have even more amazing options. And our kiddos will live long, productive lives.

I know its hard to hear.... but you BELONG here. Your daughter has CF. She is doing great and I hope, along with all the others around here that she continues to do well forever. But it doesn't change that she has CF. Period. If your family doesn't get that...well you can't force them to be less ignorant.

HUGS!!!

Heather
 
M

Mommafirst

Guest
Em,

I do know a lot of what you are describing here. Alyssa has done remarkably well. Up until her first hospitalization, I felt a lot like you did. But luckily, I think my family and friends got it with the hospital stay. They realize that a little bug can take them down quickly and EVERYTHING about good health and CF means preventative care. Of course, even the best preventative care may not be enough -- but we parents have to give our all.

In the first few months that Alyssa was on enzymes, I was pretty bad about giving them to her (because she is/was pancreatic sufficient) and I felt like it was such a waste of her time and energy. I worried about adding extra meds, the vest, etc. Then I realized, we have to keep her doing well for as long as humanly possible. And so she HAS to do all these treatments and meds. And if she's doing all these treatments and meds.... then her CF life is a CF life. Period.

Jenn (Weston's mom) said something a few days ago that has really stuck with me. She said that the treatments and meds we have today are a direct result of the moms of the last generation of CF kiddos and their hard fundraising work to get drugs like pulmozyme, hypertonic saline, etc. discovered. It is our obligation, to keep working, so that the NEXT generation of CF kiddos will have even more amazing options. And our kiddos will live long, productive lives.

I know its hard to hear.... but you BELONG here. Your daughter has CF. She is doing great and I hope, along with all the others around here that she continues to do well forever. But it doesn't change that she has CF. Period. If your family doesn't get that...well you can't force them to be less ignorant.

HUGS!!!

Heather
 
M

Mommafirst

Guest
Em,

I do know a lot of what you are describing here. Alyssa has done remarkably well. Up until her first hospitalization, I felt a lot like you did. But luckily, I think my family and friends got it with the hospital stay. They realize that a little bug can take them down quickly and EVERYTHING about good health and CF means preventative care. Of course, even the best preventative care may not be enough -- but we parents have to give our all.

In the first few months that Alyssa was on enzymes, I was pretty bad about giving them to her (because she is/was pancreatic sufficient) and I felt like it was such a waste of her time and energy. I worried about adding extra meds, the vest, etc. Then I realized, we have to keep her doing well for as long as humanly possible. And so she HAS to do all these treatments and meds. And if she's doing all these treatments and meds.... then her CF life is a CF life. Period.

Jenn (Weston's mom) said something a few days ago that has really stuck with me. She said that the treatments and meds we have today are a direct result of the moms of the last generation of CF kiddos and their hard fundraising work to get drugs like pulmozyme, hypertonic saline, etc. discovered. It is our obligation, to keep working, so that the NEXT generation of CF kiddos will have even more amazing options. And our kiddos will live long, productive lives.

I know its hard to hear.... but you BELONG here. Your daughter has CF. She is doing great and I hope, along with all the others around here that she continues to do well forever. But it doesn't change that she has CF. Period. If your family doesn't get that...well you can't force them to be less ignorant.

HUGS!!!

Heather
 
M

Mommafirst

Guest
Em,

I do know a lot of what you are describing here. Alyssa has done remarkably well. Up until her first hospitalization, I felt a lot like you did. But luckily, I think my family and friends got it with the hospital stay. They realize that a little bug can take them down quickly and EVERYTHING about good health and CF means preventative care. Of course, even the best preventative care may not be enough -- but we parents have to give our all.

In the first few months that Alyssa was on enzymes, I was pretty bad about giving them to her (because she is/was pancreatic sufficient) and I felt like it was such a waste of her time and energy. I worried about adding extra meds, the vest, etc. Then I realized, we have to keep her doing well for as long as humanly possible. And so she HAS to do all these treatments and meds. And if she's doing all these treatments and meds.... then her CF life is a CF life. Period.

Jenn (Weston's mom) said something a few days ago that has really stuck with me. She said that the treatments and meds we have today are a direct result of the moms of the last generation of CF kiddos and their hard fundraising work to get drugs like pulmozyme, hypertonic saline, etc. discovered. It is our obligation, to keep working, so that the NEXT generation of CF kiddos will have even more amazing options. And our kiddos will live long, productive lives.

I know its hard to hear.... but you BELONG here. Your daughter has CF. She is doing great and I hope, along with all the others around here that she continues to do well forever. But it doesn't change that she has CF. Period. If your family doesn't get that...well you can't force them to be less ignorant.

HUGS!!!

Heather
 
You must log in or register to reply here.
Top