My oldest and only girl out of 6 children was diagnosed with CF when she was 6 months old. She is now 13 and these days things seem to be getting worse and worse. Shes on 25 different medications now after just coming home from a 2 week hospital stay or what they refer to as a "tune up". She has just recently been diagnosed with CFRD (CF-related Diabetes) and she feels overwhelmed and depressed. I cant say that I blame her...I too often feel torn, overwhelmed, stressed, and scared at whats going on with her health. She just wants to be normal. I will never forget the spring dance she went to shortly after getting out of the hospital. She had been waiting for this "middle school prom" for months. She spent the majority of the dance crying in the bathroom because several of the students had commented on her absence from school and on the bandages which covered her pic line. She says she hates herself and asks me " why did this have to happen to me? why do I have to be sick? Why cant I be normal?" We live in a very small town in upstate NY and there are no other kids around here with CF. She feels like shes the only one even though I assure her that she is not. She feels like the world is crashing down on her and I feel so guilty. I used to be a stay at home mom...raising my kids while my husband worked every day. I was there for all the treatments, available for all the appointments, and always right on top of everything. My husband left me for his pregnant mistress 5 years ago and Ive been on my own with all the children ever since. I went back to work, and now my parents are the ones taking her to the majority of her appointments. When shes in the hospital I can only stay a few nights at a time because I have to be with the other kids...I feel so torn..so guilty..like somehow her low PFTs and need for extended hospitalizations is my fault because Im not there at home every day. I feel bad for riding her about her treatments and nagging about her meds all the time, but its the only way I feel involved. Shes so miserable. She says she hates herself because of her illness. How do I help her through this? How do I make it better? How do I stop feeling like such a bad mother? I love her endlessly and every moment I can, I hug her and kiss her and tell her I love her and try to reassure her shes not the only one and that things will get better. She doesnt believe me. She wants to find other girls her age with CF or CFRD. If there are any teenage girls out there who feel comfortable enough to write to my 13 year old daughter, her name is Alexis, and you can send email to my address <a href="mailto:angel_tear1978@yahoo.com">angel_tear1978@yahoo.com</a>.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
In search of support for my daughter.
- Thread starter MammaBall
- Start date
My oldest and only girl out of 6 children was diagnosed with CF when she was 6 months old. She is now 13 and these days things seem to be getting worse and worse. Shes on 25 different medications now after just coming homefroma 2 week hospital stay or what they refer to as a "tune up". She has just recently been diagnosed with CFRD (CF-related Diabetes) and she feels overwhelmed and depressed. I cant say that I blame her...I too often feel torn, overwhelmed, stressed, and scared at whats going on with her health. She just wants to be normal. I will never forget the spring dance she went to shortly after getting out of the hospital. She had been waiting for this "middle school prom" for months. She spent the majority of the dance crying in the bathroom because several of the students had commented on her absence from school and on the bandages which covered her pic line. She says she hates herself and asks me " why did this have to happen to me? why do I have to be sick? Why cant I be normal?" We live in a very small town in upstate NY and there are no other kids around here with CF. She feels like shes the only one even though I assure her that she is not. She feels like the world is crashing down on her and I feel so guilty. I used to be a stay at home mom...raising my kids while my husband worked every day. I was there for all the treatments, available for all the appointments, and always right on top of everything. My husband left me for his pregnant mistress 5 years ago and Ive been on my own with all the children ever since. I went back to work, and now my parents are the ones taking her to the majority of her appointments. When shes in the hospital I can only stay a few nights at a time because I have to be with the other kids...I feel so torn..so guilty..like somehow her low PFTs and need for extended hospitalizations is my fault because Im not there at home every day. I feel bad for riding her about her treatments and nagging about her meds all the time, but its the only way I feel involved. Shes so miserable. She says she hates herself because of her illness. How do I help her through this? How do I make it better? How do I stop feeling like such a bad mother? I love her endlessly and every moment I can, I hug her and kiss her and tell her I love her and try to reassure her shes not the only one and that things will get better. She doesnt believe me. She wants to find other girls her age with CF or CFRD. If there are any teenage girls out there who feel comfortable enough to write to my 13 year old daughter, her name is Alexis, and you can send email to my address <a href="mailto:angel_tear1978@yahoo.com">angel_tear1978@yahoo.com</a>.
<p>My oldest and only girl out of 6 children was diagnosed with CF when she was 6 months old. She is now 13 and these days things seem to be getting worse and worse. Shes on 25 different medications now after just coming homefroma 2 week hospital stay or what they refer to as a "tune up". She has just recently been diagnosed with CFRD (CF-related Diabetes) and she feels overwhelmed and depressed. I cant say that I blame her...I too often feel torn, overwhelmed, stressed, and scared at whats going on with her health. She just wants to be normal. I will never forget the spring dance she went to shortly after getting out of the hospital. She had been waiting for this "middle school prom" for months. She spent the majority of the dance crying in the bathroom because several of the students had commented on her absence from school and on the bandages which covered her pic line. She says she hates herself and asks me " why did this have to happen to me? why do I have to be sick? Why cant I be normal?" We live in a very small town in upstate NY and there are no other kids around here with CF. She feels like shes the only one even though I assure her that she is not. She feels like the world is crashing down on her and I feel so guilty. I used to be a stay at home mom...raising my kids while my husband worked every day. I was there for all the treatments, available for all the appointments, and always right on top of everything. My husband left me for his pregnant mistress 5 years ago and Ive been on my own with all the children ever since. I went back to work, and now my parents are the ones taking her to the majority of her appointments. When shes in the hospital I can only stay a few nights at a time because I have to be with the other kids...I feel so torn..so guilty..like somehow her low PFTs and need for extended hospitalizations is my fault because Im not there at home every day. I feel bad for riding her about her treatments and nagging about her meds all the time, but its the only way I feel involved. Shes so miserable. She says she hates herself because of her illness. How do I help her through this? How do I make it better? How do I stop feeling like such a bad mother? I love her endlessly and every moment I can, I hug her and kiss her and tell her I love her and try to reassure her shes not the only one and that things will get better. She doesnt believe me. She wants to find other girls her age with CF or CFRD. If there are any teenage girls out there who feel comfortable enough to write to my 13 year old daughter, her name is Alexis, and you can send email to my address <a href="mailto:angel_tear1978@yahoo.com">angel_tear1978@yahoo.com</a>.
I feel for your baby and for you. I too had a husband who left for his friends wife real classy. My kids were 10 8 and 6 and he was barely available and certainly did not handle any cf appointments etc, but he never did.
Unfortunatley my children are older son with CF is 29, my middle daughter is 27 and my youngest would been 26 this saturday. My son lives in NC, my daughter lives with my second husband with her children here in upstate NY. We were lucky when we moved here there was another boy with CF and all kids in school really never said anything.
I know its hard my daughter also had CFRD after she gave birth. But she never let her CF stop her nor my son they went everywhere with their medicine pacs sock over pic line. I know its hard and am sure your daughter dealing with some stupid people and fact of I am sure missing dad its a lot to bear. It may be good to have a counselor talk with her. I am not sure what center you use we used Albany. If you need to talk about anything my e-mail is <a href="mailto:tamylin88@yahoo.com">tamylin88@yahoo.com</a>. All I can think to let your daughter know is there are ignorant people in the world but true friends she may have will rally and stick with her forever
Unfortunatley my children are older son with CF is 29, my middle daughter is 27 and my youngest would been 26 this saturday. My son lives in NC, my daughter lives with my second husband with her children here in upstate NY. We were lucky when we moved here there was another boy with CF and all kids in school really never said anything.
I know its hard my daughter also had CFRD after she gave birth. But she never let her CF stop her nor my son they went everywhere with their medicine pacs sock over pic line. I know its hard and am sure your daughter dealing with some stupid people and fact of I am sure missing dad its a lot to bear. It may be good to have a counselor talk with her. I am not sure what center you use we used Albany. If you need to talk about anything my e-mail is <a href="mailto:tamylin88@yahoo.com">tamylin88@yahoo.com</a>. All I can think to let your daughter know is there are ignorant people in the world but true friends she may have will rally and stick with her forever
I feel for your baby and for you. I too had a husband who left for his friends wife real classy. My kids were 10 8 and 6 and he was barely available and certainly did not handle any cf appointments etc, but he never did.
Unfortunatley my children are older son with CF is 29, my middle daughter is 27 and my youngest would been 26 this saturday. My son lives in NC, my daughter lives with my second husband with her children here in upstate NY. We were lucky when we moved here there was another boy with CF and all kids in school really never said anything.
I know its hard my daughter also had CFRD after she gave birth. But she never let her CF stop her nor my son they went everywhere with their medicine pacs sock over pic line. I know its hard and am sure your daughter dealing with some stupid people and fact of I am sure missing dad its a lot to bear. It may be good to have a counselor talk with her. I am not sure what center you use we used Albany. If you need to talk about anything my e-mail is <a href="mailto:tamylin88@yahoo.com">tamylin88@yahoo.com</a>. All I can think to let your daughter know is there are ignorant people in the world but true friends she may have will rally and stick with her forever
Unfortunatley my children are older son with CF is 29, my middle daughter is 27 and my youngest would been 26 this saturday. My son lives in NC, my daughter lives with my second husband with her children here in upstate NY. We were lucky when we moved here there was another boy with CF and all kids in school really never said anything.
I know its hard my daughter also had CFRD after she gave birth. But she never let her CF stop her nor my son they went everywhere with their medicine pacs sock over pic line. I know its hard and am sure your daughter dealing with some stupid people and fact of I am sure missing dad its a lot to bear. It may be good to have a counselor talk with her. I am not sure what center you use we used Albany. If you need to talk about anything my e-mail is <a href="mailto:tamylin88@yahoo.com">tamylin88@yahoo.com</a>. All I can think to let your daughter know is there are ignorant people in the world but true friends she may have will rally and stick with her forever
<p>I feel for your baby and for you. I too had a husband who left for his friends wife real classy. My kids were 10 8 and 6 and he was barely available and certainly did not handle any cf appointments etc, but he never did.
<p>Unfortunatley my children are older son with CF is 29, my middle daughter is 27 and my youngest would been 26 this saturday. My son lives in NC, my daughter lives with my second husband with her children here in upstate NY. We were lucky when we moved here there was another boy with CF and all kids in school really never said anything.
<p>I know its hard my daughter also had CFRD after she gave birth. But she never let her CF stop her nor my son they went everywhere with their medicine pacs sock over pic line. I know its hard and am sure your daughter dealing with some stupid people and fact of I am sure missing dad its a lot to bear. It may be good to have a counselor talk with her. I am not sure what center you use we used Albany. If you need to talk about anything my e-mail is <a href="mailto:tamylin88@yahoo.com">tamylin88@yahoo.com</a>. All I can think to let your daughter know is there are ignorant people in the world but true friends she may have will rally and stick with her forever
<p>Unfortunatley my children are older son with CF is 29, my middle daughter is 27 and my youngest would been 26 this saturday. My son lives in NC, my daughter lives with my second husband with her children here in upstate NY. We were lucky when we moved here there was another boy with CF and all kids in school really never said anything.
<p>I know its hard my daughter also had CFRD after she gave birth. But she never let her CF stop her nor my son they went everywhere with their medicine pacs sock over pic line. I know its hard and am sure your daughter dealing with some stupid people and fact of I am sure missing dad its a lot to bear. It may be good to have a counselor talk with her. I am not sure what center you use we used Albany. If you need to talk about anything my e-mail is <a href="mailto:tamylin88@yahoo.com">tamylin88@yahoo.com</a>. All I can think to let your daughter know is there are ignorant people in the world but true friends she may have will rally and stick with her forever
Oh my goodness MamaBall, reading your post literally brought tearrs to my eyes! But I can relate. My name is Megan and I was diagnosed at 6 months also. I am 21 years old now but I feel like I could really help your daughter. Alexis sounds like a little me. I too asked my mom things like: why me? What did i do to deserve this? I felt helpless and alone. I grew up in a small town too, and there were 3 of us girls that had cf in town. We didnt get to talk as much as I would have liked though, bc our docs said its "dangerous" to hang with other cf kids. since around the age of 14-16 is when things started to go down hill for my health. My mom and dad divoriced when i was little, maybe 5 yrs old. For my mom to be able to support me and my two sisters she had to work two jobs and done this since I can remember and still does it to this day. My dad wasnt in the picture for most of my childhood but he has started to show big diffrences in the last few years, which I hope Alexis' dad does too or is in her life now. As far as the kids at school, there will always be those bullys and its maybe something that I can talk your daughter through. She knows you love her unconditionally, even though it may not seem that way all the time, you are her mother and you are doing what you can. There is no right or wrong/better or worse way to raise a child with cf. I have a huge interest in children, I wanted to go into that for school but because of my health I haven't been able to. So I know raising a child is hard enough; then you place in a factor like cf and it totally turns everything upside down. I went through a very rough teen "phase" which Im not at all proud of to this day. I rebeled because I hated CF sooooo much but now I have come to accept it even thought it may have taken up to 21 years for me to realize. Your daughter is going through something, no offense, that you cannot fully understand nor any1 else except another CFer. In the future, as she gets older, try and stay away from that phrase-"I understand what ur going through" I would be MORE than happy to talk to and be supportive to your daughter because I know if I had some1 like that when I was growing up, life would of been a whole lot easier/less depressing. Also, I suffer from depression, anxiety-every since my heart stopped last year, and hypoglycemia. No diebeties yet, knock on wood. Depression, I think, is almost impossible to get around in a CFers life. So its very normal for her to feel this way. Please feel free to email me at <a href="mailto:meagndewald4444@hotmail.com">meagndewald4444@hotmail.com</a> with any questions or if your daughter is interested in talking to me. I'm also on facebook, if your daughter has one of those. I hope the best for you and alexis! Peace and Love-Megan
P.S. I hope this helps!
P.S. I hope this helps!
Oh my goodness MamaBall, reading your post literally brought tearrs to my eyes! But I can relate. My name is Megan and I was diagnosed at 6 months also. I am 21 years old now but I feel like I could really help your daughter. Alexis sounds like a little me. I too asked my mom things like: why me? What did i do to deserve this? I felt helpless and alone. I grew up in a small town too, and there were 3 of us girls that had cf in town. We didnt get to talk as much as I would have liked though, bc our docs said its "dangerous" to hang with other cf kids. since around the age of 14-16 is when things started to go down hill for my health. My mom and dad divoriced when i was little, maybe 5 yrs old. For my mom to be able to support me and my two sisters she had to work two jobs and done this since I can remember and still does it to this day. My dad wasnt in the picture for most of my childhood but he has started to show big diffrences in the last few years, which I hope Alexis' dad does too or is in her life now. As far as the kids at school, there will always be those bullys and its maybe something that I can talk your daughter through. She knows you love her unconditionally, even though it may not seem that way all the time, you are her mother and you are doing what you can. There is no right or wrong/better or worse way to raise a child with cf. I have a huge interest in children, I wanted to go into that for school but because of my health I haven't been able to. So I know raising a child is hard enough; then you place in a factor like cf and it totally turns everything upside down. I went through a very rough teen "phase" which Im not at all proud of to this day. I rebeled because I hated CF sooooo much but now I have come to accept it even thought it may have taken up to 21 years for me to realize. Your daughter is going through something, no offense, that you cannot fully understand nor any1 else except another CFer. In the future, as she gets older, try and stay away from that phrase-"I understand what ur going through" I would be MORE than happy to talk to and be supportive to your daughter because I know if I had some1 like that when I was growing up, life would of been a whole lot easier/less depressing. Also, I suffer from depression, anxiety-every since my heart stopped last year, and hypoglycemia. No diebeties yet, knock on wood. Depression, I think, is almost impossible to get around in a CFers life. So its very normal for her to feel this way. Please feel free to email me at <a href="mailto:meagndewald4444@hotmail.com">meagndewald4444@hotmail.com</a> with any questions or if your daughter is interested in talking to me. I'm also on facebook, if your daughter has one of those. I hope the best for you and alexis! Peace and Love-Megan
P.S. I hope this helps!
P.S. I hope this helps!
<p>Oh my goodness MamaBall, reading your post literally brought tearrs to my eyes! But I can relate. My name is Megan and I was diagnosed at 6 months also. I am 21 years old now but I feel like I could really help your daughter. Alexis sounds like a little me. I too asked my mom things like: why me? What did i do to deserve this? I felt helpless and alone. I grew up in a small town too, and there were 3 of us girls that had cf in town. We didnt get to talk as much as I would have liked though, bc our docs said its "dangerous" to hang with other cf kids. since around the age of 14-16 is when things started to go down hill for my health. My mom and dad divoriced when i was little, maybe 5 yrs old. For my mom to be able to support me and my two sisters she had to work two jobs and done this since I can remember and still does it to this day. My dad wasnt in the picture for most of my childhood but he has started to show big diffrences in the last few years, which I hope Alexis' dad does too or is in her life now. As far as the kids at school, there will always be those bullys and its maybe something that I can talk your daughter through. She knows you love her unconditionally, even though it may not seem that way all the time, you are her mother and you are doing what you can. There is no right or wrong/better or worse way to raise a child with cf. I have a huge interest in children, I wanted to go into that for school but because of my health I haven't been able to. So I know raising a child is hard enough; then you place in a factor like cf and it totally turns everything upside down. I went through a very rough teen "phase" which Im not at all proud of to this day. I rebeled because I hated CF sooooo much but now I have come to accept it even thought it may have taken up to 21 years for me to realize. Your daughter is going through something, no offense, that you cannot fully understand nor any1 else except another CFer. In the future, as she gets older, try and stay away from that phrase-"I understand what ur going through" I would be MORE than happy to talk to and be supportive to your daughter because I know if I had some1 like that when I was growing up, life would of been a whole lot easier/less depressing. Also, I suffer from depression, anxiety-every since my heart stopped last year, and hypoglycemia. No diebeties yet, knock on wood. Depression, I think, is almost impossible to get around in a CFers life. So its very normal for her to feel this way. Please feel free to email me at <a href="mailto:meagndewald4444@hotmail.com">meagndewald4444@hotmail.com</a> with any questions or if your daughter is interested in talking to me. I'm also on facebook, if your daughter has one of those. I hope the best for you and alexis! Peace and Love-Megan
<p>P.S. I hope this helps!
<p>P.S. I hope this helps!
S
scheesman
Guest
I have a friend that is 16 with cf. I just sent her mom an email about this. I wanted to ask her first, didn't want to step on any toes. So if she's says its ok i will giver Ashley your email address and hopefully she can help. She is actually in the hospital right now. She had a double lung 1-1/2 yrs ago. I couldn't imagine going thru Wht cfers have to go thru. They are some of the strongest people I know.
S
scheesman
Guest
I have a friend that is 16 with cf. I just sent her mom an email about this. I wanted to ask her first, didn't want to step on any toes. So if she's says its ok i will giver Ashley your email address and hopefully she can help. She is actually in the hospital right now. She had a double lung 1-1/2 yrs ago. I couldn't imagine going thru Wht cfers have to go thru. They are some of the strongest people I know.
S
scheesman
Guest
I have a friend that is 16 with cf. I just sent her mom an email about this. I wanted to ask her first, didn't want to step on any toes. So if she's says its ok i will giver Ashley your email address and hopefully she can help. She is actually in the hospital right now. She had a double lung 1-1/2 yrs ago. I couldn't imagine going thru Wht cfers have to go thru. They are some of the strongest people I know.
S
scheesman
Guest
Oh ya, and does your ex know just how much of a douchbag he is. Like its not hard enough as a family but to break it up. I would like to have his email address....
S
scheesman
Guest
Oh ya, and does your ex know just how much of a douchbag he is. Like its not hard enough as a family but to break it up. I would like to have his email address....
S
scheesman
Guest
Oh ya, and does your ex know just how much of a douchbag he is. Like its not hard enough as a family but to break it up. I would like to have his email address....
P
patrish22
Guest
First and formost: YOU ARE NOT A BAD MOTHER! Just the fact that you are asking for help for your daughter and not yourself shows that. Anyone who has delt with the teenage years with CF can related to the anguish. All any parent wants is for their child to be healthy, well and lead a normal life. We can't fully understand what people with CF are going through and that has to be one of the most frustrating things. It's even harder when other complications (such as depression) come into play. Thats why places like this site are so important, so people can connect. As a parent all we want to do is make it better and sometimes we just can't! It's even harder when someone with CF is completely complient with their treatments and they still decline. Then you face other CF families who are thriving and you feel like a total failure. I watched my daughter's dreams deminish with her depression. We spent years with therapists/meds, etc, some days were good some were bad. As you work so hard to take care of your family (and I KNOW you're working hard) try to remember not to be so hard on yourself. Definately have those w/CF connect with your daughter, they can truly help her in ways we can't. BUT, take the time yourself to connect with others like yourself who sometimes feel totally powerless. Everyone's life changes with this diagnosis. Sure, we put on the brave face and work hard at being strong and positive, but like our children we have good and bad days. I raised 3 with CF (twin daughters, 25yrs, CFDR, advanced cirrhosis, one passed away last fall and a son 24yrs, few complications). I use to get so depressed when going to clinic and hearing the parents of others who are thriving, and not suffering from depression. My girls would get so angry because their brother is doing so much better. One day I had a doctor (thank God not ours) lecture me about how they should wear masks when they are together because of the difficulties of CF people being together, ARE YOU KIDDING ME! Yes, he is right, but as if its not hard enough to try to create something remotely relating to a normal life without having them walk around with masks. If you need to talk you are welcome to talk to me anytime, patrish22@hotmail.com After all the years of me feeling like a total failure, my daughter told her hospice nurse what a great mom I was, and how I always fought for her, and even when I had to go to work she knew she was on my mind, and how much she loved me for it. Just love your girlie and be the best Mom you can (I believe you already are). No matter how hard you try, there are some things you can't relate to, so let the experts (those with the disease) reach out to her, especially those who have delt with the depression. I won't say its easy, because its not, but remember, you don't have to be alone.
P
patrish22
Guest
First and formost: YOU ARE NOT A BAD MOTHER! Just the fact that you are asking for help for your daughter and not yourself shows that. Anyone who has delt with the teenage years with CF can related to the anguish. All any parent wants is for their child to be healthy, well and lead a normal life. We can't fully understand what people with CF are going through and that has to be one of the most frustrating things. It's even harder when other complications (such as depression) come into play. Thats why places like this site are so important, so people can connect. As a parent all we want to do is make it better and sometimes we just can't! It's even harder when someone with CF is completely complient with their treatments and they still decline. Then you face other CF families who are thriving and you feel like a total failure. I watched my daughter's dreams deminish with her depression. We spent years with therapists/meds, etc, some days were good some were bad. As you work so hard to take care of your family (and I KNOW you're working hard) try to remember not to be so hard on yourself. Definately have those w/CF connect with your daughter, they can truly help her in ways we can't. BUT, take the time yourself to connect with others like yourself who sometimes feel totally powerless. Everyone's life changes with this diagnosis. Sure, we put on the brave face and work hard at being strong and positive, but like our children we have good and bad days. I raised 3 with CF (twin daughters, 25yrs, CFDR, advanced cirrhosis, one passed away last fall and a son 24yrs, few complications). I use to get so depressed when going to clinic and hearing the parents of others who are thriving, and not suffering from depression. My girls would get so angry because their brother is doing so much better. One day I had a doctor (thank God not ours) lecture me about how they should wear masks when they are together because of the difficulties of CF people being together, ARE YOU KIDDING ME! Yes, he is right, but as if its not hard enough to try to create something remotely relating to a normal life without having them walk around with masks. If you need to talk you are welcome to talk to me anytime, patrish22@hotmail.com After all the years of me feeling like a total failure, my daughter told her hospice nurse what a great mom I was, and how I always fought for her, and even when I had to go to work she knew she was on my mind, and how much she loved me for it. Just love your girlie and be the best Mom you can (I believe you already are). No matter how hard you try, there are some things you can't relate to, so let the experts (those with the disease) reach out to her, especially those who have delt with the depression. I won't say its easy, because its not, but remember, you don't have to be alone.
P
patrish22
Guest
First and formost: YOU ARE NOT A BAD MOTHER! Just the fact that you are asking for help for your daughter and not yourself shows that. Anyone who has delt with the teenage years with CF can related to the anguish. All any parent wants is for their child to be healthy, well and lead a normal life. We can't fully understand what people with CF are going through and that has to be one of the most frustrating things. It's even harder when other complications (such as depression) come into play. Thats why places like this site are so important, so people can connect. As a parent all we want to do is make it better and sometimes we just can't! It's even harder when someone with CF is completely complient with their treatments and they still decline. Then you face other CF families who are thriving and you feel like a total failure. I watched my daughter's dreams deminish with her depression. We spent years with therapists/meds, etc, some days were good some were bad. As you work so hard to take care of your family (and I KNOW you're working hard) try to remember not to be so hard on yourself. Definately have those w/CF connect with your daughter, they can truly help her in ways we can't. BUT, take the time yourself to connect with others like yourself who sometimes feel totally powerless. Everyone's life changes with this diagnosis. Sure, we put on the brave face and work hard at being strong and positive, but like our children we have good and bad days. I raised 3 with CF (twin daughters, 25yrs, CFDR, advanced cirrhosis, one passed away last fall and a son 24yrs, few complications). I use to get so depressed when going to clinic and hearing the parents of others who are thriving, and not suffering from depression. My girls would get so angry because their brother is doing so much better. One day I had a doctor (thank God not ours) lecture me about how they should wear masks when they are together because of the difficulties of CF people being together, ARE YOU KIDDING ME! Yes, he is right, but as if its not hard enough to try to create something remotely relating to a normal life without having them walk around with masks. If you need to talk you are welcome to talk to me anytime, patrish22@hotmail.com After all the years of me feeling like a total failure, my daughter told her hospice nurse what a great mom I was, and how I always fought for her, and even when I had to go to work she knew she was on my mind, and how much she loved me for it. Just love your girlie and be the best Mom you can (I believe you already are). No matter how hard you try, there are some things you can't relate to, so let the experts (those with the disease) reach out to her, especially those who have delt with the depression. I won't say its easy, because its not, but remember, you don't have to be alone.
I am so sorry that you guys are going through this now. It does seem like it will never end. I was a single mom for about 7 years after my husband lost his battle against cancer. Josh was just 2 when he died. his fther traveled alot so I often felt like a single mom anyway. Josh was sich quite a bit and his older brother was having a lot of behavioral issues at the time (found out later that he has a seizure disorder that causes behavioral outburst, and the ADHD isn't helping much). We were a mess! I went ot therapy and so did my children. My husband and I seperated at one point in there and I had the kids in therapy. Talk to the school counselor, see if the CF center has a therapist on staff (don't know how close by they are). Family therapy may prove to be the most helpful. I don't know what kind of insurance you have, but with the changes in the health care laws, all insurance companies are suppose to offer therapy.
the spell checker is not working so sorry for any typos.
the spell checker is not working so sorry for any typos.
I am so sorry that you guys are going through this now. It does seem like it will never end. I was a single mom for about 7 years after my husband lost his battle against cancer. Josh was just 2 when he died. his fther traveled alot so I often felt like a single mom anyway. Josh was sich quite a bit and his older brother was having a lot of behavioral issues at the time (found out later that he has a seizure disorder that causes behavioral outburst, and the ADHD isn't helping much). We were a mess! I went ot therapy and so did my children. My husband and I seperated at one point in there and I had the kids in therapy. Talk to the school counselor, see if the CF center has a therapist on staff (don't know how close by they are). Family therapy may prove to be the most helpful. I don't know what kind of insurance you have, but with the changes in the health care laws, all insurance companies are suppose to offer therapy.
the spell checker is not working so sorry for any typos.
the spell checker is not working so sorry for any typos.