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in response to post...to adult CFers....please read
- Thread starter Seana30
- Start date
Seana,
Wow, sorry your thread has started such a storm, I though these forums were suppossed to be for support and questions to others who should try to understand what anyone with CF is dealing with! CF is a horrible disease for the patient and the family! Anyway, that said, I understood your post and relate to it very much! I am so happy that Courtney is doing so well. We just got home from Hayly's birthday visit at the clinic and they were very pleased with how she is doing. SHe weighs 23 pounds 8 ounce and is up to 30.5 inches tall, eating well and everythign looks great, just have to wait until the throat culture comes back to make sure she doesn't have any nasty bugs, but she does not have a lot of lung issue, so far she has only cultures staph and I hope we keep it that way.
I hope you keep coming here and posting, even though some people always seem to be negative, I also see that you have gotten some positive responses as well!
Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF
Wow, sorry your thread has started such a storm, I though these forums were suppossed to be for support and questions to others who should try to understand what anyone with CF is dealing with! CF is a horrible disease for the patient and the family! Anyway, that said, I understood your post and relate to it very much! I am so happy that Courtney is doing so well. We just got home from Hayly's birthday visit at the clinic and they were very pleased with how she is doing. SHe weighs 23 pounds 8 ounce and is up to 30.5 inches tall, eating well and everythign looks great, just have to wait until the throat culture comes back to make sure she doesn't have any nasty bugs, but she does not have a lot of lung issue, so far she has only cultures staph and I hope we keep it that way.
I hope you keep coming here and posting, even though some people always seem to be negative, I also see that you have gotten some positive responses as well!
Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF
Luke,
I usually don't respond to negative threads, but your really struck a chord with me. I am the parent of a child with CF, my daughter Hayley is only 17 months old and has already had to go through so much! I don't think anyone was trying to imply that parents have it worse than their child with CF (obviously we don't) or that parents are more important that the child with CF, but that both the child and parents deal with this horrible disease all of their lives. It IS difficult for a parent to get past the guilt that this is a genetic disease and that you helped give CF to your child, it IS difficult to see your child on a daily basis have to do all the treatments, nebulizers, CPT, enzymes, ect, when you would rather them not have to go through all of that! I could go on and on, but just as I will never understand how it feels to have CF, YOU will never understand how I feel until you have a child with CF, so stop bashing people who come to this forum seeking support and understanding from others in a similar situation.
I feel bad for you, not because you have CF, but because obviously you have a very negative outlook on a lot of things (I have read a lot of your posts). I can only hope that I raise my daughter to respect that everyone has a right to express their opinion, their pain, their grief and not be bashed for it by someone like you. I wish you only the best and hope that you remain healthy! I am deeply encouraged by the fact that you just turned 30.
Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF<b>Text</b>
I usually don't respond to negative threads, but your really struck a chord with me. I am the parent of a child with CF, my daughter Hayley is only 17 months old and has already had to go through so much! I don't think anyone was trying to imply that parents have it worse than their child with CF (obviously we don't) or that parents are more important that the child with CF, but that both the child and parents deal with this horrible disease all of their lives. It IS difficult for a parent to get past the guilt that this is a genetic disease and that you helped give CF to your child, it IS difficult to see your child on a daily basis have to do all the treatments, nebulizers, CPT, enzymes, ect, when you would rather them not have to go through all of that! I could go on and on, but just as I will never understand how it feels to have CF, YOU will never understand how I feel until you have a child with CF, so stop bashing people who come to this forum seeking support and understanding from others in a similar situation.
I feel bad for you, not because you have CF, but because obviously you have a very negative outlook on a lot of things (I have read a lot of your posts). I can only hope that I raise my daughter to respect that everyone has a right to express their opinion, their pain, their grief and not be bashed for it by someone like you. I wish you only the best and hope that you remain healthy! I am deeply encouraged by the fact that you just turned 30.
Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF<b>Text</b>