I too felt like we were being punished. That god, some higher power was telling us that we just didn't know how good we'd had it, that we didn't appreciate what we were given. But once I got over the anger, I realized that some people wouldn't be able to handle our child's diagnosis. Some people would give up. And now I just appreciate what we were given. Sure I get angry at times and the helplessness I feel at times, when I realize that I can't make my child feel better
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To parents of a CFer
- Thread starter Countjyro
- Start date
I too felt like we were being punished. That god, some higher power was telling us that we just didn't know how good we'd had it, that we didn't appreciate what we were given. But once I got over the anger, I realized that some people wouldn't be able to handle our child's diagnosis. Some people would give up. And now I just appreciate what we were given. Sure I get angry at times and the helplessness I feel at times, when I realize that I can't make my child feel better
debs2girls
New member
Hi Countjyro.....I have a five yo daughter who we are having trouble getting a solid dx....we are in the "grey area"....anyway, my baby is adopted so I have a different perspective to this....We got her when she was 20 hours old....if we had known then that she had this or may have this....it would not have changed our minds at all.....I do feel guilty that she has this but not in the sense that we caused it...I also feel guilty because as of now we still have not told the agency so they can notify her birthparents...we still havent decided what we should do on that one.....
Debbie
Debbie
debs2girls
New member
Hi Countjyro.....I have a five yo daughter who we are having trouble getting a solid dx....we are in the "grey area"....anyway, my baby is adopted so I have a different perspective to this....We got her when she was 20 hours old....if we had known then that she had this or may have this....it would not have changed our minds at all.....I do feel guilty that she has this but not in the sense that we caused it...I also feel guilty because as of now we still have not told the agency so they can notify her birthparents...we still havent decided what we should do on that one.....
Debbie
Debbie
J
jaybird
Guest
We didn't know we were carriers until Derek was born. And aside from any temporary guilt/depression/anger phases we've been through since his diagnosis, the bottom line is that he is THE best thing that's ever happened in our lives. I hope your parents feel the same about you!
J
jaybird
Guest
We didn't know we were carriers until Derek was born. And aside from any temporary guilt/depression/anger phases we've been through since his diagnosis, the bottom line is that he is THE best thing that's ever happened in our lives. I hope your parents feel the same about you!
I have a son ,6 weeks old. He had two surgerys and now he has a colostomy bag. Soon he will go back to the hospital. But nothing can stop me from loving him. With or without CF he is my son... It is hard to look at him and not knowing will he survive another surgery. But that is my reality... I would not change him for nothing. For me he is the greatest baby on the world!!! P.S.sory for bad english...
I have a son ,6 weeks old. He had two surgerys and now he has a colostomy bag. Soon he will go back to the hospital. But nothing can stop me from loving him. With or without CF he is my son... It is hard to look at him and not knowing will he survive another surgery. But that is my reality... I would not change him for nothing. For me he is the greatest baby on the world!!! P.S.sory for bad english...
i regularly read these questions and answers just for information about cf . my son was diagnosed two yrs. ago he's 8 now. today this particular question has made me very sad, i don, t know why , i am terrified about what the future holds for my son, he is ok now but he is unaware of how serious this illness is . when do you tell a little child the full extent of this illness . how old were all you cfers out there when your parents told you. did you understand fully the consequences?
i regularly read these questions and answers just for information about cf . my son was diagnosed two yrs. ago he's 8 now. today this particular question has made me very sad, i don, t know why , i am terrified about what the future holds for my son, he is ok now but he is unaware of how serious this illness is . when do you tell a little child the full extent of this illness . how old were all you cfers out there when your parents told you. did you understand fully the consequences?
I'm sorry that my son has CF but don't let myself feel guilty about it. It's a "grass is greener" myth that parents-to-be can do something to guarantee perfect health for the life of their child - lots more people get cancer than CF or take up smoking or other preventable bad health habits. Most of the time I feel grateful that if he was going to be born to someone and have CF, I'm glad he's mine because my spouse and I are fortunate enough to be able to give him everything he needs and are 10 minutes from a great CF center.
The one thing that does make me feel guilty, though, is when I find myself feeling sorry for myself at the prossibility of outliving my son.
The one thing that does make me feel guilty, though, is when I find myself feeling sorry for myself at the prossibility of outliving my son.
I'm sorry that my son has CF but don't let myself feel guilty about it. It's a "grass is greener" myth that parents-to-be can do something to guarantee perfect health for the life of their child - lots more people get cancer than CF or take up smoking or other preventable bad health habits. Most of the time I feel grateful that if he was going to be born to someone and have CF, I'm glad he's mine because my spouse and I are fortunate enough to be able to give him everything he needs and are 10 minutes from a great CF center.
The one thing that does make me feel guilty, though, is when I find myself feeling sorry for myself at the prossibility of outliving my son.
The one thing that does make me feel guilty, though, is when I find myself feeling sorry for myself at the prossibility of outliving my son.
I hate the fact that my child has CF, but in a way that is what makes him who he is. He has been thru several surgeries in his 4 years, hospitalizations, home IV's, etc., etc., He is the strongest child I know and I learn from him every day. I believe God gave him to us for a reason, we had never dealt with anything like this before, never even knew it existed! Our lives are completely differenet now, we aren't so much into money, we appreciate our families more, I no longer work to stay home to care for our kids. My husband tends to feel guilty for him having CF, he has a harder time than I, even though I do all the med's and breathing treatments- 4 a day. I don't know how long our child will be with us, but I would much rather have him than to of never of known him at all! I don't know how I will ever handle it if something were to happen to him before we are gone, I try not to think about it and live day to day. None of us are gaurenteed anything.
Take care
Take care
I hate the fact that my child has CF, but in a way that is what makes him who he is. He has been thru several surgeries in his 4 years, hospitalizations, home IV's, etc., etc., He is the strongest child I know and I learn from him every day. I believe God gave him to us for a reason, we had never dealt with anything like this before, never even knew it existed! Our lives are completely differenet now, we aren't so much into money, we appreciate our families more, I no longer work to stay home to care for our kids. My husband tends to feel guilty for him having CF, he has a harder time than I, even though I do all the med's and breathing treatments- 4 a day. I don't know how long our child will be with us, but I would much rather have him than to of never of known him at all! I don't know how I will ever handle it if something were to happen to him before we are gone, I try not to think about it and live day to day. None of us are gaurenteed anything.
Take care
Take care