My daughter is scared, what do I tell her ?

[ginandbrea]

My daughter was Dx in October at age 9, she has been in Children's Hospital three times since Oct with exacerbations. She is sick of the hospital. When she returns to school from the hospital she has peers that really do not know her but hear that she "has a disease" and always ask if "she is going to die". How do you explain CF to your child without them falling to pieces? She knows a little but is probably thinking of so much that she doesn't tell me. I need advice on how to tell her and what to tell her. Her entire life has changed and she often says how much she hates her life because of CF and why would God do this. I tell her that God knows she is a very strong and special girl and he wouldn't give her something she could not handle and that God has chosen each of us to have a great challenge in our life so that we stay strong. Is she getting depressed? Any advice out there?

Gina

 

[ginandbrea]

My daughter was Dx in October at age 9, she has been in Children's Hospital three times since Oct with exacerbations. She is sick of the hospital. When she returns to school from the hospital she has peers that really do not know her but hear that she "has a disease" and always ask if "she is going to die". How do you explain CF to your child without them falling to pieces? She knows a little but is probably thinking of so much that she doesn't tell me. I need advice on how to tell her and what to tell her. Her entire life has changed and she often says how much she hates her life because of CF and why would God do this. I tell her that God knows she is a very strong and special girl and he wouldn't give her something she could not handle and that God has chosen each of us to have a great challenge in our life so that we stay strong. Is she getting depressed? Any advice out there?

Gina

 

[ginandbrea]

My daughter was Dx in October at age 9, she has been in Children's Hospital three times since Oct with exacerbations. She is sick of the hospital. When she returns to school from the hospital she has peers that really do not know her but hear that she "has a disease" and always ask if "she is going to die". How do you explain CF to your child without them falling to pieces? She knows a little but is probably thinking of so much that she doesn't tell me. I need advice on how to tell her and what to tell her. Her entire life has changed and she often says how much she hates her life because of CF and why would God do this. I tell her that God knows she is a very strong and special girl and he wouldn't give her something she could not handle and that God has chosen each of us to have a great challenge in our life so that we stay strong. Is she getting depressed? Any advice out there?

Gina

 

[ginandbrea]

My daughter was Dx in October at age 9, she has been in Children's Hospital three times since Oct with exacerbations. She is sick of the hospital. When she returns to school from the hospital she has peers that really do not know her but hear that she "has a disease" and always ask if "she is going to die". How do you explain CF to your child without them falling to pieces? She knows a little but is probably thinking of so much that she doesn't tell me. I need advice on how to tell her and what to tell her. Her entire life has changed and she often says how much she hates her life because of CF and why would God do this. I tell her that God knows she is a very strong and special girl and he wouldn't give her something she could not handle and that God has chosen each of us to have a great challenge in our life so that we stay strong. Is she getting depressed? Any advice out there?

Gina

 

[ginandbrea]

My daughter was Dx in October at age 9, she has been in Children's Hospital three times since Oct with exacerbations. She is sick of the hospital. When she returns to school from the hospital she has peers that really do not know her but hear that she "has a disease" and always ask if "she is going to die". How do you explain CF to your child without them falling to pieces? She knows a little but is probably thinking of so much that she doesn't tell me. I need advice on how to tell her and what to tell her. Her entire life has changed and she often says how much she hates her life because of CF and why would God do this. I tell her that God knows she is a very strong and special girl and he wouldn't give her something she could not handle and that God has chosen each of us to have a great challenge in our life so that we stay strong. Is she getting depressed? Any advice out there?
<br />
<br />Gina

 

[MicheleGazelle]

I have a 21 year old son with CF who has not been on antibiotics in over 10 years. We have made major lifestyle changes and taken a fascinating journey to get ourselves well. For us, the battle against CF is primarily mental and social. It is about giving up assumptions about how the world works and seeing things differently from most people around us. To me that is why my son and I were born with CF: so we could walk away from societal expectations and remake our lives, unburdened by such things. That part of living with CF has been extremely rewarding. If you are interested in what we are doing, there is a little info about it on my website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/">http://www.healthgazelle.org/</a>

I honestly believe it is possible to get a child with CF well. I believe it because I have living proof of it in my own home. I hope that information will give both you and your child hope and a path forward for dealing effectively with this.

Good luck with all of this.

Peace.

 

[MicheleGazelle]

I have a 21 year old son with CF who has not been on antibiotics in over 10 years. We have made major lifestyle changes and taken a fascinating journey to get ourselves well. For us, the battle against CF is primarily mental and social. It is about giving up assumptions about how the world works and seeing things differently from most people around us. To me that is why my son and I were born with CF: so we could walk away from societal expectations and remake our lives, unburdened by such things. That part of living with CF has been extremely rewarding. If you are interested in what we are doing, there is a little info about it on my website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/">http://www.healthgazelle.org/</a>

I honestly believe it is possible to get a child with CF well. I believe it because I have living proof of it in my own home. I hope that information will give both you and your child hope and a path forward for dealing effectively with this.

Good luck with all of this.

Peace.

 

[MicheleGazelle]

I have a 21 year old son with CF who has not been on antibiotics in over 10 years. We have made major lifestyle changes and taken a fascinating journey to get ourselves well. For us, the battle against CF is primarily mental and social. It is about giving up assumptions about how the world works and seeing things differently from most people around us. To me that is why my son and I were born with CF: so we could walk away from societal expectations and remake our lives, unburdened by such things. That part of living with CF has been extremely rewarding. If you are interested in what we are doing, there is a little info about it on my website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/">http://www.healthgazelle.org/</a>

I honestly believe it is possible to get a child with CF well. I believe it because I have living proof of it in my own home. I hope that information will give both you and your child hope and a path forward for dealing effectively with this.

Good luck with all of this.

Peace.

 

[MicheleGazelle]

I have a 21 year old son with CF who has not been on antibiotics in over 10 years. We have made major lifestyle changes and taken a fascinating journey to get ourselves well. For us, the battle against CF is primarily mental and social. It is about giving up assumptions about how the world works and seeing things differently from most people around us. To me that is why my son and I were born with CF: so we could walk away from societal expectations and remake our lives, unburdened by such things. That part of living with CF has been extremely rewarding. If you are interested in what we are doing, there is a little info about it on my website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/">http://www.healthgazelle.org/</a>

I honestly believe it is possible to get a child with CF well. I believe it because I have living proof of it in my own home. I hope that information will give both you and your child hope and a path forward for dealing effectively with this.

Good luck with all of this.

Peace.

 

[MicheleGazelle]

I have a 21 year old son with CF who has not been on antibiotics in over 10 years. We have made major lifestyle changes and taken a fascinating journey to get ourselves well. For us, the battle against CF is primarily mental and social. It is about giving up assumptions about how the world works and seeing things differently from most people around us. To me that is why my son and I were born with CF: so we could walk away from societal expectations and remake our lives, unburdened by such things. That part of living with CF has been extremely rewarding. If you are interested in what we are doing, there is a little info about it on my website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/">http://www.healthgazelle.org/</a>
<br />
<br />I honestly believe it is possible to get a child with CF well. I believe it because I have living proof of it in my own home. I hope that information will give both you and your child hope and a path forward for dealing effectively with this.
<br />
<br />Good luck with all of this.
<br />
<br />Peace.

 

[mousesmom]

My daughter has not been in hospital in 9 years but had a very difficult time before that and was in hospital at least every 3-4 months. Her heart function dropped to 29% and her doc even suggested that she might have to start her on O2. Suddenly whilst on treatment for the heart she became stronger and stronger and now suffers a bit with mild Asthma and is Pi. Because I am a single mom I decided when Monique was 3 that we will face whatever comes with a positive attitude.I don't know if is this or maybe something to do with puberty, that she is so well. My advice is allow your child to plan her futur as any child would. Take it one day at a time, tell her all the good stories such as all the new treatment being developed, this is a reason for her to keep herself healthy. Keep polistive and have faith.

P.S. Monique has DDF508

 

[mousesmom]

My daughter has not been in hospital in 9 years but had a very difficult time before that and was in hospital at least every 3-4 months. Her heart function dropped to 29% and her doc even suggested that she might have to start her on O2. Suddenly whilst on treatment for the heart she became stronger and stronger and now suffers a bit with mild Asthma and is Pi. Because I am a single mom I decided when Monique was 3 that we will face whatever comes with a positive attitude.I don't know if is this or maybe something to do with puberty, that she is so well. My advice is allow your child to plan her futur as any child would. Take it one day at a time, tell her all the good stories such as all the new treatment being developed, this is a reason for her to keep herself healthy. Keep polistive and have faith.

P.S. Monique has DDF508

 

[mousesmom]

My daughter has not been in hospital in 9 years but had a very difficult time before that and was in hospital at least every 3-4 months. Her heart function dropped to 29% and her doc even suggested that she might have to start her on O2. Suddenly whilst on treatment for the heart she became stronger and stronger and now suffers a bit with mild Asthma and is Pi. Because I am a single mom I decided when Monique was 3 that we will face whatever comes with a positive attitude.I don't know if is this or maybe something to do with puberty, that she is so well. My advice is allow your child to plan her futur as any child would. Take it one day at a time, tell her all the good stories such as all the new treatment being developed, this is a reason for her to keep herself healthy. Keep polistive and have faith.

P.S. Monique has DDF508

 

[mousesmom]

My daughter has not been in hospital in 9 years but had a very difficult time before that and was in hospital at least every 3-4 months. Her heart function dropped to 29% and her doc even suggested that she might have to start her on O2. Suddenly whilst on treatment for the heart she became stronger and stronger and now suffers a bit with mild Asthma and is Pi. Because I am a single mom I decided when Monique was 3 that we will face whatever comes with a positive attitude.I don't know if is this or maybe something to do with puberty, that she is so well. My advice is allow your child to plan her futur as any child would. Take it one day at a time, tell her all the good stories such as all the new treatment being developed, this is a reason for her to keep herself healthy. Keep polistive and have faith.

P.S. Monique has DDF508

 

[mousesmom]

My daughter has not been in hospital in 9 years but had a very difficult time before that and was in hospital at least every 3-4 months. Her heart function dropped to 29% and her doc even suggested that she might have to start her on O2. Suddenly whilst on treatment for the heart she became stronger and stronger and now suffers a bit with mild Asthma and is Pi. Because I am a single mom I decided when Monique was 3 that we will face whatever comes with a positive attitude.I don't know if is this or maybe something to do with puberty, that she is so well. My advice is allow your child to plan her futur as any child would. Take it one day at a time, tell her all the good stories such as all the new treatment being developed, this is a reason for her to keep herself healthy. Keep polistive and have faith.
<br />
<br />P.S. Monique has DDF508

 

[Transplantmommy]

I know that his may not be much help but if she is hating CF partially because of her friends making rude comments, then they were never really her friends at all. People should like her for who she is and not what she has. She is very beautiful!!

As a child, there were days that I really hated CF but I had a great support group to pull me through. Although I am not very religious, I have always known that I was not given more than I could handle....God knew that I was a strong person and that I could fight it. I have had a little over 30 procedures and surgeries and they never get any easier but I believe they have made me stronger and more compassionate.

Your daughter will find her reason for life at some point but she is still young. Maybe bring it up to her that she needs to talk and let it out so you know how she feels and you can help her more. If it comes to the point where she is just really upset about the CF all the time, then maybe put her into counseling. I have never gone to counseling because of CF but I have gone for family counseling and it helped. Maybe even find someone her age with CF that she can at least talk to on the phone so she knows that she is not alone.

Hope this at least helps a little.

 

[Transplantmommy]

I know that his may not be much help but if she is hating CF partially because of her friends making rude comments, then they were never really her friends at all. People should like her for who she is and not what she has. She is very beautiful!!

As a child, there were days that I really hated CF but I had a great support group to pull me through. Although I am not very religious, I have always known that I was not given more than I could handle....God knew that I was a strong person and that I could fight it. I have had a little over 30 procedures and surgeries and they never get any easier but I believe they have made me stronger and more compassionate.

Your daughter will find her reason for life at some point but she is still young. Maybe bring it up to her that she needs to talk and let it out so you know how she feels and you can help her more. If it comes to the point where she is just really upset about the CF all the time, then maybe put her into counseling. I have never gone to counseling because of CF but I have gone for family counseling and it helped. Maybe even find someone her age with CF that she can at least talk to on the phone so she knows that she is not alone.

Hope this at least helps a little.

 

[Transplantmommy]

I know that his may not be much help but if she is hating CF partially because of her friends making rude comments, then they were never really her friends at all. People should like her for who she is and not what she has. She is very beautiful!!

As a child, there were days that I really hated CF but I had a great support group to pull me through. Although I am not very religious, I have always known that I was not given more than I could handle....God knew that I was a strong person and that I could fight it. I have had a little over 30 procedures and surgeries and they never get any easier but I believe they have made me stronger and more compassionate.

Your daughter will find her reason for life at some point but she is still young. Maybe bring it up to her that she needs to talk and let it out so you know how she feels and you can help her more. If it comes to the point where she is just really upset about the CF all the time, then maybe put her into counseling. I have never gone to counseling because of CF but I have gone for family counseling and it helped. Maybe even find someone her age with CF that she can at least talk to on the phone so she knows that she is not alone.

Hope this at least helps a little.

 

[Transplantmommy]

I know that his may not be much help but if she is hating CF partially because of her friends making rude comments, then they were never really her friends at all. People should like her for who she is and not what she has. She is very beautiful!!

As a child, there were days that I really hated CF but I had a great support group to pull me through. Although I am not very religious, I have always known that I was not given more than I could handle....God knew that I was a strong person and that I could fight it. I have had a little over 30 procedures and surgeries and they never get any easier but I believe they have made me stronger and more compassionate.

Your daughter will find her reason for life at some point but she is still young. Maybe bring it up to her that she needs to talk and let it out so you know how she feels and you can help her more. If it comes to the point where she is just really upset about the CF all the time, then maybe put her into counseling. I have never gone to counseling because of CF but I have gone for family counseling and it helped. Maybe even find someone her age with CF that she can at least talk to on the phone so she knows that she is not alone.

Hope this at least helps a little.

 

[Transplantmommy]

I know that his may not be much help but if she is hating CF partially because of her friends making rude comments, then they were never really her friends at all. People should like her for who she is and not what she has. She is very beautiful!!
<br />
<br />As a child, there were days that I really hated CF but I had a great support group to pull me through. Although I am not very religious, I have always known that I was not given more than I could handle....God knew that I was a strong person and that I could fight it. I have had a little over 30 procedures and surgeries and they never get any easier but I believe they have made me stronger and more compassionate.
<br />
<br />Your daughter will find her reason for life at some point but she is still young. Maybe bring it up to her that she needs to talk and let it out so you know how she feels and you can help her more. If it comes to the point where she is just really upset about the CF all the time, then maybe put her into counseling. I have never gone to counseling because of CF but I have gone for family counseling and it helped. Maybe even find someone her age with CF that she can at least talk to on the phone so she knows that she is not alone.
<br />
<br />Hope this at least helps a little.