We have just found out that my grandson has CF, he is 3 months old. My daughter, which is his mother, so upset and thinking that he won't live to be 30. We have even told her about all of the advances that has been made with CF. I know that the more she learns, the better. What can I do to help her not have such a down look on it. She needs a little hope. I was in there when the doctors told her that with the treatments and drugs that he should have a fairly normal life, but she hears it differently. I need advise on how I can help.
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My daughter needs help and she's the mother!
- Thread starter vickalip
- Start date
We have just found out that my grandson has CF, he is 3 months old. My daughter, which is his mother, so upset and thinking that he won't live to be 30. We have even told her about all of the advances that has been made with CF. I know that the more she learns, the better. What can I do to help her not have such a down look on it. She needs a little hope. I was in there when the doctors told her that with the treatments and drugs that he should have a fairly normal life, but she hears it differently. I need advise on how I can help.
We have just found out that my grandson has CF, he is 3 months old. My daughter, which is his mother, so upset and thinking that he won't live to be 30. We have even told her about all of the advances that has been made with CF. I know that the more she learns, the better. What can I do to help her not have such a down look on it. She needs a little hope. I was in there when the doctors told her that with the treatments and drugs that he should have a fairly normal life, but she hears it differently. I need advise on how I can help.
We have just found out that my grandson has CF, he is 3 months old. My daughter, which is his mother, so upset and thinking that he won't live to be 30. We have even told her about all of the advances that has been made with CF. I know that the more she learns, the better. What can I do to help her not have such a down look on it. She needs a little hope. I was in there when the doctors told her that with the treatments and drugs that he should have a fairly normal life, but she hears it differently. I need advise on how I can help.
We have just found out that my grandson has CF, he is 3 months old. My daughter, which is his mother, so upset and thinking that he won't live to be 30. We have even told her about all of the advances that has been made with CF. I know that the more she learns, the better. What can I do to help her not have such a down look on it. She needs a little hope. I was in there when the doctors told her that with the treatments and drugs that he should have a fairly normal life, but she hears it differently. I need advise on how I can help.
Hi and welcome to the site. I'm sorry for your grandson's diagnosis. I would like to point out, however, that having a dx allows you to get him the proper treatment. So many people go for a very long time not knowing what is wrong with their child, and they can't offer proper care. My son went 15 years before we finally found his CF.
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
Hi and welcome to the site. I'm sorry for your grandson's diagnosis. I would like to point out, however, that having a dx allows you to get him the proper treatment. So many people go for a very long time not knowing what is wrong with their child, and they can't offer proper care. My son went 15 years before we finally found his CF.
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
Hi and welcome to the site. I'm sorry for your grandson's diagnosis. I would like to point out, however, that having a dx allows you to get him the proper treatment. So many people go for a very long time not knowing what is wrong with their child, and they can't offer proper care. My son went 15 years before we finally found his CF.
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
Hi and welcome to the site. I'm sorry for your grandson's diagnosis. I would like to point out, however, that having a dx allows you to get him the proper treatment. So many people go for a very long time not knowing what is wrong with their child, and they can't offer proper care. My son went 15 years before we finally found his CF.
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
Hi and welcome to the site. I'm sorry for your grandson's diagnosis. I would like to point out, however, that having a dx allows you to get him the proper treatment. So many people go for a very long time not knowing what is wrong with their child, and they can't offer proper care. My son went 15 years before we finally found his CF.
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
It was devastating to hear it, and I have never cried so hard in my life. Once I was able to breath again, I started searching and educating myself as much as possible. The more I read, the worse I felt. It was all doom and gloom. Then I found this site. I found people here with CF who are in their 40's 50's and beyond! I found UP-TO-DATE INFORMATION! Most of what you read is so outdated, so be careful. People with CF have to work very hard to stay healthy, but it can be done. There are so many new treatment options now. Yes CF is still not something we can cure, and honestly may never be something we can cure. After all, it is genetic. BUT we can treat it's symptoms and help prevent it's progress.
Your daughter will handle this in her own way. Let her "grieve" for lack of a better word. When she is ready, she can come here for that hope you say she needs. I think we all need hope. It gave me great hope to see CF patients much older than I was originally told my son would live to be. CF presents itself differently in every person. Identical twins with the same mutations can have different clinical outcomes. Tell your daughter that nothing is set in stone, and her baby does not have an expiration date.
You can help by educating yourself too. I believe that knowledge is power. CF care is very time consuming and tiring. There will come a time when she needs a break. If you know how to handle all of your grandson's treatments, you can take him for a day or a night and let her get out. It's easy to get caught up in the CF and miss out on all of the little things that come with a new baby. So the last bit of advice I have for you is to try and just enjoy that baby!
Stacey
M
mneville
Guest
I express my sympathy for your family esp your daughter because I felt the same way. Our firstborn son was diagnosed at 8 days old much to our total shock. I cried and cried and thought life would never be good again. I also sought information. Knowledge is power in fighting this disease.
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
M
mneville
Guest
I express my sympathy for your family esp your daughter because I felt the same way. Our firstborn son was diagnosed at 8 days old much to our total shock. I cried and cried and thought life would never be good again. I also sought information. Knowledge is power in fighting this disease.
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
M
mneville
Guest
I express my sympathy for your family esp your daughter because I felt the same way. Our firstborn son was diagnosed at 8 days old much to our total shock. I cried and cried and thought life would never be good again. I also sought information. Knowledge is power in fighting this disease.
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
M
mneville
Guest
I express my sympathy for your family esp your daughter because I felt the same way. Our firstborn son was diagnosed at 8 days old much to our total shock. I cried and cried and thought life would never be good again. I also sought information. Knowledge is power in fighting this disease.
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
M
mneville
Guest
I express my sympathy for your family esp your daughter because I felt the same way. Our firstborn son was diagnosed at 8 days old much to our total shock. I cried and cried and thought life would never be good again. I also sought information. Knowledge is power in fighting this disease.
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
Please tell your daughter to have hope. Our son is now three years old and is doing absolutely incredible! He is big and strong and healthy! Yes, he does treatments and takes pills but other than that he is just like all his friends. There are days that I still get upset but I know that life does not come without challenges. This is a manageable and treatable illness thanks to medical advances. We've taken our son to one of the best CF docs in Minnesota and he told us to plan for a healthy, long life for Aidan and so we will!
We just had a second baby with the help of IVF/PGD so he does not have Cystic Fibrosis. Have your daughter email me if she wishes. meganeneville@hotmail.com
Megan, mom to Aidan (CF) and Gavin (no CF)
M
Mommafirst
Guest
I feel for you and your daughter. I was there just over a year ago and its not a fun place to be. But as hard as it is to see your daughter miserable over this, she has to go through it. There is no magic thing you can say to make her happy right now. CF sucks. The diagnosis sucks. Sure there is a lot to be hopeful about and she will find that, and hopefully she'll come here and not feel so lonely in her life as a CF mom. But time is all that is going to ease this. I'm over a year in and some days I'm still doom and gloom. It takes a long long time to come to grips with this and having someone tell you that it could be worse or that its not as bad as it used to be, doesn't really help. Or at least it didn't help me. I just needed people to let me be sad. Let me say it sucks. To agree that it stinks and its a rotten hand to be dealt. eventually she'll find her way.
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
M
Mommafirst
Guest
I feel for you and your daughter. I was there just over a year ago and its not a fun place to be. But as hard as it is to see your daughter miserable over this, she has to go through it. There is no magic thing you can say to make her happy right now. CF sucks. The diagnosis sucks. Sure there is a lot to be hopeful about and she will find that, and hopefully she'll come here and not feel so lonely in her life as a CF mom. But time is all that is going to ease this. I'm over a year in and some days I'm still doom and gloom. It takes a long long time to come to grips with this and having someone tell you that it could be worse or that its not as bad as it used to be, doesn't really help. Or at least it didn't help me. I just needed people to let me be sad. Let me say it sucks. To agree that it stinks and its a rotten hand to be dealt. eventually she'll find her way.
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
M
Mommafirst
Guest
I feel for you and your daughter. I was there just over a year ago and its not a fun place to be. But as hard as it is to see your daughter miserable over this, she has to go through it. There is no magic thing you can say to make her happy right now. CF sucks. The diagnosis sucks. Sure there is a lot to be hopeful about and she will find that, and hopefully she'll come here and not feel so lonely in her life as a CF mom. But time is all that is going to ease this. I'm over a year in and some days I'm still doom and gloom. It takes a long long time to come to grips with this and having someone tell you that it could be worse or that its not as bad as it used to be, doesn't really help. Or at least it didn't help me. I just needed people to let me be sad. Let me say it sucks. To agree that it stinks and its a rotten hand to be dealt. eventually she'll find her way.
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
M
Mommafirst
Guest
I feel for you and your daughter. I was there just over a year ago and its not a fun place to be. But as hard as it is to see your daughter miserable over this, she has to go through it. There is no magic thing you can say to make her happy right now. CF sucks. The diagnosis sucks. Sure there is a lot to be hopeful about and she will find that, and hopefully she'll come here and not feel so lonely in her life as a CF mom. But time is all that is going to ease this. I'm over a year in and some days I'm still doom and gloom. It takes a long long time to come to grips with this and having someone tell you that it could be worse or that its not as bad as it used to be, doesn't really help. Or at least it didn't help me. I just needed people to let me be sad. Let me say it sucks. To agree that it stinks and its a rotten hand to be dealt. eventually she'll find her way.
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
M
Mommafirst
Guest
I feel for you and your daughter. I was there just over a year ago and its not a fun place to be. But as hard as it is to see your daughter miserable over this, she has to go through it. There is no magic thing you can say to make her happy right now. CF sucks. The diagnosis sucks. Sure there is a lot to be hopeful about and she will find that, and hopefully she'll come here and not feel so lonely in her life as a CF mom. But time is all that is going to ease this. I'm over a year in and some days I'm still doom and gloom. It takes a long long time to come to grips with this and having someone tell you that it could be worse or that its not as bad as it used to be, doesn't really help. Or at least it didn't help me. I just needed people to let me be sad. Let me say it sucks. To agree that it stinks and its a rotten hand to be dealt. eventually she'll find her way.
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!
I'm sorry, this is probably not what you want to hear. I wish there was a way to ease the pain. If there was, I would have found it by now, because its been a tough year for us, but it does get easier. You do get back your hope and your vision. But for awhile the black cloud stays above your head, it is unrelenting. It echoes in your ears daily. But eventually the sun shines again. There are black days, but they are interspersed with sunlight and baby smiles!!!