Do you feel this way about caring for your child with CF?

[MavinetteH]

My son is ten-years-old this year. He was dx'ed when he was six months old. I do not feel that way at all. I may be very nieve because I really feel he has a mild case. I know someone posted there are no mild cases, but ours really is. Hunter has had one lung infection with iv antiboitcs when he was five and had his feeding tube put in at age six, that is it. He is on 6 meds and some otc vitamins, juiceplus tabs, and fish oil. I cant remember why the fish oil, the doc from the CFF recommended it.
I remember when Hunter was a year old he was in a study at Hopkins and another woman had said that if she would have known before her baby was born she may have aborted. I remember looking at this healthy little girl, with her big blue eyes, and blonde little curls that I would take the little girl home with me. But I dont think you could ever know what someone is going through in thier personal life when they say or write something. It may have broken this mans heart to see his daughter dying before his eyes. I did not read the book, I could not get through it. I try my hardest not to think about the dying, I focass on the living, again it could be me being nieve again.

 

[MavinetteH]

My son is ten-years-old this year. He was dx'ed when he was six months old. I do not feel that way at all. I may be very nieve because I really feel he has a mild case. I know someone posted there are no mild cases, but ours really is. Hunter has had one lung infection with iv antiboitcs when he was five and had his feeding tube put in at age six, that is it. He is on 6 meds and some otc vitamins, juiceplus tabs, and fish oil. I cant remember why the fish oil, the doc from the CFF recommended it.
I remember when Hunter was a year old he was in a study at Hopkins and another woman had said that if she would have known before her baby was born she may have aborted. I remember looking at this healthy little girl, with her big blue eyes, and blonde little curls that I would take the little girl home with me. But I dont think you could ever know what someone is going through in thier personal life when they say or write something. It may have broken this mans heart to see his daughter dying before his eyes. I did not read the book, I could not get through it. I try my hardest not to think about the dying, I focass on the living, again it could be me being nieve again.

 

[MavinetteH]

My son is ten-years-old this year. He was dx'ed when he was six months old. I do not feel that way at all. I may be very nieve because I really feel he has a mild case. I know someone posted there are no mild cases, but ours really is. Hunter has had one lung infection with iv antiboitcs when he was five and had his feeding tube put in at age six, that is it. He is on 6 meds and some otc vitamins, juiceplus tabs, and fish oil. I cant remember why the fish oil, the doc from the CFF recommended it.
I remember when Hunter was a year old he was in a study at Hopkins and another woman had said that if she would have known before her baby was born she may have aborted. I remember looking at this healthy little girl, with her big blue eyes, and blonde little curls that I would take the little girl home with me. But I dont think you could ever know what someone is going through in thier personal life when they say or write something. It may have broken this mans heart to see his daughter dying before his eyes. I did not read the book, I could not get through it. I try my hardest not to think about the dying, I focass on the living, again it could be me being nieve again.

 

[MavinetteH]

My son is ten-years-old this year. He was dx'ed when he was six months old. I do not feel that way at all. I may be very nieve because I really feel he has a mild case. I know someone posted there are no mild cases, but ours really is. Hunter has had one lung infection with iv antiboitcs when he was five and had his feeding tube put in at age six, that is it. He is on 6 meds and some otc vitamins, juiceplus tabs, and fish oil. I cant remember why the fish oil, the doc from the CFF recommended it.
I remember when Hunter was a year old he was in a study at Hopkins and another woman had said that if she would have known before her baby was born she may have aborted. I remember looking at this healthy little girl, with her big blue eyes, and blonde little curls that I would take the little girl home with me. But I dont think you could ever know what someone is going through in thier personal life when they say or write something. It may have broken this mans heart to see his daughter dying before his eyes. I did not read the book, I could not get through it. I try my hardest not to think about the dying, I focass on the living, again it could be me being nieve again.

 

[MavinetteH]

My son is ten-years-old this year. He was dx'ed when he was six months old. I do not feel that way at all. I may be very nieve because I really feel he has a mild case. I know someone posted there are no mild cases, but ours really is. Hunter has had one lung infection with iv antiboitcs when he was five and had his feeding tube put in at age six, that is it. He is on 6 meds and some otc vitamins, juiceplus tabs, and fish oil. I cant remember why the fish oil, the doc from the CFF recommended it.
<br />I remember when Hunter was a year old he was in a study at Hopkins and another woman had said that if she would have known before her baby was born she may have aborted. I remember looking at this healthy little girl, with her big blue eyes, and blonde little curls that I would take the little girl home with me. But I dont think you could ever know what someone is going through in thier personal life when they say or write something. It may have broken this mans heart to see his daughter dying before his eyes. I did not read the book, I could not get through it. I try my hardest not to think about the dying, I focass on the living, again it could be me being nieve again.

 

[ConnorsMom]

We have always lived with CF as a 'back burner' issue. It's always there, we have to give it attention to keep it from boiling over, but it has never been a primary issue. I don't feel as tho Connor's days are numbered any more than my own are. We all have to deal with some issue in our lives, harsh realities of life, CF is just one of those, we deal with it, and live each day to the fullest.

 

[ConnorsMom]

We have always lived with CF as a 'back burner' issue. It's always there, we have to give it attention to keep it from boiling over, but it has never been a primary issue. I don't feel as tho Connor's days are numbered any more than my own are. We all have to deal with some issue in our lives, harsh realities of life, CF is just one of those, we deal with it, and live each day to the fullest.

 

[ConnorsMom]

We have always lived with CF as a 'back burner' issue. It's always there, we have to give it attention to keep it from boiling over, but it has never been a primary issue. I don't feel as tho Connor's days are numbered any more than my own are. We all have to deal with some issue in our lives, harsh realities of life, CF is just one of those, we deal with it, and live each day to the fullest.

 

[ConnorsMom]

We have always lived with CF as a 'back burner' issue. It's always there, we have to give it attention to keep it from boiling over, but it has never been a primary issue. I don't feel as tho Connor's days are numbered any more than my own are. We all have to deal with some issue in our lives, harsh realities of life, CF is just one of those, we deal with it, and live each day to the fullest.

 

[ConnorsMom]

We have always lived with CF as a 'back burner' issue. It's always there, we have to give it attention to keep it from boiling over, but it has never been a primary issue. I don't feel as tho Connor's days are numbered any more than my own are. We all have to deal with some issue in our lives, harsh realities of life, CF is just one of those, we deal with it, and live each day to the fullest.

 

[fourkidsmom]

No I don't feel that way at all either, never have. I feel it does take alot of time to maintain this disease and sometimes it is more of a struggle than other times, but I don't feel like I am just postponing the death. I hope for a cure one day, no one knows what tomorrow holds- -so I live day to day and hope for the best.

Fourkidsmom

 

[fourkidsmom]

No I don't feel that way at all either, never have. I feel it does take alot of time to maintain this disease and sometimes it is more of a struggle than other times, but I don't feel like I am just postponing the death. I hope for a cure one day, no one knows what tomorrow holds- -so I live day to day and hope for the best.

Fourkidsmom

 

[fourkidsmom]

No I don't feel that way at all either, never have. I feel it does take alot of time to maintain this disease and sometimes it is more of a struggle than other times, but I don't feel like I am just postponing the death. I hope for a cure one day, no one knows what tomorrow holds- -so I live day to day and hope for the best.

Fourkidsmom

 

[fourkidsmom]

No I don't feel that way at all either, never have. I feel it does take alot of time to maintain this disease and sometimes it is more of a struggle than other times, but I don't feel like I am just postponing the death. I hope for a cure one day, no one knows what tomorrow holds- -so I live day to day and hope for the best.

Fourkidsmom

 

[fourkidsmom]

No I don't feel that way at all either, never have. I feel it does take alot of time to maintain this disease and sometimes it is more of a struggle than other times, but I don't feel like I am just postponing the death. I hope for a cure one day, no one knows what tomorrow holds- -so I live day to day and hope for the best.
<br />
<br />Fourkidsmom

 

[mneville]

I also read that quote and also think it was referring to the whole "end stage" process plus the book is from many years ago when the treatments were minimal. It's ironic because my friend and I watched that heartbreaking movie about 100 times when we were in high school. Now here I am 10 years later raising a CFer myself!

In the beginning, I kinda felt like 'what is the use? it's not going to cure him. we're still going to lose this battle.' But not anymore! The treatments for him are not painful for the most past, just time consuming. And he lives more each day than most kids I know live in a week! His life is so full because we make it that way. Plus my husband reminds me that Life itself is a terminal illness if you really think about it. Each day we live is a day closer to our death-not great to think about but true. So I try my best now to stay positive although I can only imagine how difficult that must be as the patient gets sicker....Live for today is my motto.

Megan

 

[mneville]

I also read that quote and also think it was referring to the whole "end stage" process plus the book is from many years ago when the treatments were minimal. It's ironic because my friend and I watched that heartbreaking movie about 100 times when we were in high school. Now here I am 10 years later raising a CFer myself!

In the beginning, I kinda felt like 'what is the use? it's not going to cure him. we're still going to lose this battle.' But not anymore! The treatments for him are not painful for the most past, just time consuming. And he lives more each day than most kids I know live in a week! His life is so full because we make it that way. Plus my husband reminds me that Life itself is a terminal illness if you really think about it. Each day we live is a day closer to our death-not great to think about but true. So I try my best now to stay positive although I can only imagine how difficult that must be as the patient gets sicker....Live for today is my motto.

Megan

 

[mneville]

I also read that quote and also think it was referring to the whole "end stage" process plus the book is from many years ago when the treatments were minimal. It's ironic because my friend and I watched that heartbreaking movie about 100 times when we were in high school. Now here I am 10 years later raising a CFer myself!

In the beginning, I kinda felt like 'what is the use? it's not going to cure him. we're still going to lose this battle.' But not anymore! The treatments for him are not painful for the most past, just time consuming. And he lives more each day than most kids I know live in a week! His life is so full because we make it that way. Plus my husband reminds me that Life itself is a terminal illness if you really think about it. Each day we live is a day closer to our death-not great to think about but true. So I try my best now to stay positive although I can only imagine how difficult that must be as the patient gets sicker....Live for today is my motto.

Megan

 

[mneville]

I also read that quote and also think it was referring to the whole "end stage" process plus the book is from many years ago when the treatments were minimal. It's ironic because my friend and I watched that heartbreaking movie about 100 times when we were in high school. Now here I am 10 years later raising a CFer myself!

In the beginning, I kinda felt like 'what is the use? it's not going to cure him. we're still going to lose this battle.' But not anymore! The treatments for him are not painful for the most past, just time consuming. And he lives more each day than most kids I know live in a week! His life is so full because we make it that way. Plus my husband reminds me that Life itself is a terminal illness if you really think about it. Each day we live is a day closer to our death-not great to think about but true. So I try my best now to stay positive although I can only imagine how difficult that must be as the patient gets sicker....Live for today is my motto.

Megan

 

[mneville]

I also read that quote and also think it was referring to the whole "end stage" process plus the book is from many years ago when the treatments were minimal. It's ironic because my friend and I watched that heartbreaking movie about 100 times when we were in high school. Now here I am 10 years later raising a CFer myself!
<br />
<br />In the beginning, I kinda felt like 'what is the use? it's not going to cure him. we're still going to lose this battle.' But not anymore! The treatments for him are not painful for the most past, just time consuming. And he lives more each day than most kids I know live in a week! His life is so full because we make it that way. Plus my husband reminds me that Life itself is a terminal illness if you really think about it. Each day we live is a day closer to our death-not great to think about but true. So I try my best now to stay positive although I can only imagine how difficult that must be as the patient gets sicker....Live for today is my motto.
<br />
<br />Megan
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