Advice Requested

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TonyaH

Guest
<p>Hi there,
<p>I am most known here for having a son with CF, but I also lost my mom to CF when I was 24. She was sick all my life. I am happy to share my story with anyone who has specific questions..feel free to pm me and I can tell you what went on in my head as an eight year old, 13 year old, 17 year ld..etc. etc.. I have a special place in my heart for kids whose parents battle this illness, so if my experience can help you know what they might be thinking/feeling, I'm happy to share.
<p>
<p>And let me add..to this day, my mom is my hero. I love her, miss her, and still talk to her EVERY DAY. She is a part of my life, my children's lives, and her strength and courage help me help Andrew through all of this. I am certain you are all the same inspiration to your chldren!
 
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chrissyd

New member
I have CF, so this is my take on it. My daughter grew up knowing that I was sick. When she was little we used to tell her that I wasn't sick as in "cold" sick but "disease" sick. So in that sense she's always known I'm sick, and we have always been honest with her about CF. That being said I think she grasped the concept of the mortality issue probably aound 9 or 10. Although we never hid it; it is such a big reality to take in.

I think you'll know when its right for you to talk to her about it.

Good luck...
 
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chrissyd

New member
I have CF, so this is my take on it. My daughter grew up knowing that I was sick. When she was little we used to tell her that I wasn't sick as in "cold" sick but "disease" sick. So in that sense she's always known I'm sick, and we have always been honest with her about CF. That being said I think she grasped the concept of the mortality issue probably aound 9 or 10. Although we never hid it; it is such a big reality to take in.

I think you'll know when its right for you to talk to her about it.

Good luck...
 
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chrissyd

New member
I have CF, so this is my take on it. My daughter grew up knowing that I was sick. When she was little we used to tell her that I wasn't sick as in "cold" sick but "disease" sick. So in that sense she's always known I'm sick, and we have always been honest with her about CF. That being said I think she grasped the concept of the mortality issue probably aound 9 or 10. Although we never hid it; it is such a big reality to take in.
<br />
<br />I think you'll know when its right for you to talk to her about it.
<br />
<br />Good luck...
 
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Printer

Active member
Ana:
I'm 71 and nobody has told me when I will die.  Besides there will be a CURE in her lifetime, maybe even in my lifetime.
Bill
 
P

Printer

Active member
Ana:
I'm 71 and nobody has told me when I will die. Besides there will be a CURE in her lifetime, maybe even in my lifetime.
Bill
 
P

Printer

Active member
<p>Ana:
<p>I'm 71 and nobody has told me when I will die. Besides there will be a CURE in her lifetime, maybe even in my lifetime.
<p>Bill
 
S

StillFighting

New member
Hi everyone,

Thank you for replying.

I am very protective of my daughter. I am answering her specific questions, but not offering more information than necessary. My daughter is adopted. I feel guilty because I will one day abandon her just as she had been abandoned by her biologocal parents. I feel that she does not need to have to deal with this additional issue given that she is already dealing with the issue of her biological parents.

I would be interested in hearing what she is thinking about my illness but do not want to ask her in fear of more detailed questions. She currently knows that I am doing treatments to keep my lungs as healthy as possible, but she is not present when in hospital or clinic visits.

I would be interested in knowing how one felt growing up as a child knowing that their parent had CF. TonyaH can you share your experiences as a child. Were you always frightened of losing your mother? Was she upfront and direct with you?

The last thing I would want for my daughter would be that she be in constant fear losing her mother. I believe I am doing the right thing by not yet telling her about the fatality of the disease.

Does everyone agree?

Still Fighting
 
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StillFighting

New member
Hi everyone,

Thank you for replying.

I am very protective of my daughter. I am answering her specific questions, but not offering more information than necessary. My daughter is adopted. I feel guilty because I will one day abandon her just as she had been abandoned by her biologocal parents. I feel that she does not need to have to deal with this additional issue given that she is already dealing with the issue of her biological parents.

I would be interested in hearing what she is thinking about my illness but do not want to ask her in fear of more detailed questions. She currently knows that I am doing treatments to keep my lungs as healthy as possible, but she is not present when in hospital or clinic visits.

I would be interested in knowing how one felt growing up as a child knowing that their parent had CF. TonyaH can you share your experiences as a child. Were you always frightened of losing your mother? Was she upfront and direct with you?

The last thing I would want for my daughter would be that she be in constant fear losing her mother. I believe I am doing the right thing by not yet telling her about the fatality of the disease.

Does everyone agree?

Still Fighting
 
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StillFighting

New member
Hi everyone,
<br />
<br />Thank you for replying.
<br />
<br />I am very protective of my daughter. I am answering her specific questions, but not offering more information than necessary. My daughter is adopted. I feel guilty because I will one day abandon her just as she had been abandoned by her biologocal parents. I feel that she does not need to have to deal with this additional issue given that she is already dealing with the issue of her biological parents.
<br />
<br />I would be interested in hearing what she is thinking about my illness but do not want to ask her in fear of more detailed questions. She currently knows that I am doing treatments to keep my lungs as healthy as possible, but she is not present when in hospital or clinic visits.
<br />
<br />I would be interested in knowing how one felt growing up as a child knowing that their parent had CF. TonyaH can you share your experiences as a child. Were you always frightened of losing your mother? Was she upfront and direct with you?
<br />
<br />The last thing I would want for my daughter would be that she be in constant fear losing her mother. I believe I am doing the right thing by not yet telling her about the fatality of the disease.
<br />
<br />Does everyone agree?
<br />
<br />Still Fighting
 
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chrissyd

New member
My daughter is adopted also. Her birth mother ran off after a judge told her she had to pay child support to my husband. I really struggle with the thought of abandoning her too. Every child is different and I think you'll know best when she is ready. I too would be interested in TonyaH's answer, only because I do constantly worry about the reprocussions of being honest. (although I do have to say that I promised her that I would always be honest. So when she asked I told her...But like I said you know you daughter better than I do so if you think thats whats best for her at this time...it probably is)

I guess my short answer (too late LOL) would be, yes I agree.
 
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chrissyd

New member
My daughter is adopted also. Her birth mother ran off after a judge told her she had to pay child support to my husband. I really struggle with the thought of abandoning her too. Every child is different and I think you'll know best when she is ready. I too would be interested in TonyaH's answer, only because I do constantly worry about the reprocussions of being honest. (although I do have to say that I promised her that I would always be honest. So when she asked I told her...But like I said you know you daughter better than I do so if you think thats whats best for her at this time...it probably is)

I guess my short answer (too late LOL) would be, yes I agree.
 
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chrissyd

New member
My daughter is adopted also. Her birth mother ran off after a judge told her she had to pay child support to my husband. I really struggle with the thought of abandoning her too. Every child is different and I think you'll know best when she is ready. I too would be interested in TonyaH's answer, only because I do constantly worry about the reprocussions of being honest. (although I do have to say that I promised her that I would always be honest. So when she asked I told her...But like I said you know you daughter better than I do so if you think thats whats best for her at this time...it probably is)
<br />
<br />I guess my short answer (too late LOL) would be, yes I agree.
<br />
<br />
 
K

Keepercjr

Guest
Thank you for doing this thread. I worry about this with my kids. They know I do treatments and take medicine but that is about the extent of it. I tell them I have CF but I don't think they grasp that it is anything different. They haven't really asked any questions either. I guess because it is all so NORMAL to them. I have always done treatments, always coughed, always gone to the doctor, etc.

If I were to have a more detailed discussion with my 6yo I don't think I would include mortality issues. I agree that we may even have a cure in my lifetime. We could all die anytime and not just from CF. He knows his uncle Jonny (my brother) died when he was 13 because "he got very very sick". My son recently asked me how old everyone was (his parents and grandparents) and when I told him how old I was he said he was glad I wasn't old so I wouldn't die soon. I told him that even though his grandparents are older it doesn't mean they are going to die soon! And that was basically the end of the conversation and he hasn't asked about any of that again.
 
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Keepercjr

Guest
Thank you for doing this thread. I worry about this with my kids. They know I do treatments and take medicine but that is about the extent of it. I tell them I have CF but I don't think they grasp that it is anything different. They haven't really asked any questions either. I guess because it is all so NORMAL to them. I have always done treatments, always coughed, always gone to the doctor, etc.

If I were to have a more detailed discussion with my 6yo I don't think I would include mortality issues. I agree that we may even have a cure in my lifetime. We could all die anytime and not just from CF. He knows his uncle Jonny (my brother) died when he was 13 because "he got very very sick". My son recently asked me how old everyone was (his parents and grandparents) and when I told him how old I was he said he was glad I wasn't old so I wouldn't die soon. I told him that even though his grandparents are older it doesn't mean they are going to die soon! And that was basically the end of the conversation and he hasn't asked about any of that again.
 
K

Keepercjr

Guest
Thank you for doing this thread. I worry about this with my kids. They know I do treatments and take medicine but that is about the extent of it. I tell them I have CF but I don't think they grasp that it is anything different. They haven't really asked any questions either. I guess because it is all so NORMAL to them. I have always done treatments, always coughed, always gone to the doctor, etc.
<br />
<br />If I were to have a more detailed discussion with my 6yo I don't think I would include mortality issues. I agree that we may even have a cure in my lifetime. We could all die anytime and not just from CF. He knows his uncle Jonny (my brother) died when he was 13 because "he got very very sick". My son recently asked me how old everyone was (his parents and grandparents) and when I told him how old I was he said he was glad I wasn't old so I wouldn't die soon. I told him that even though his grandparents are older it doesn't mean they are going to die soon! And that was basically the end of the conversation and he hasn't asked about any of that again.
<br />
 
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rubyroselee

New member
I was actually just thinking about this same issue this morning.  My son was in the room with me while I was vesting/nebbing and he asked me if I could turn up the TV because he couldn't hear over all my noise.  I realized that he really doesn't know what I'm doing and it's just normal to him.  He probably thinks that everyone has a mom that has to do what I do...which is just the way kids think at that age.  I'm just waiting for the day when he's with one of his friends and he says, "Don't you get aggravated when your mom's vest and medicine is so loud that you can't hear TV?"
But I definitely plan on talking to him (and my other son) about it whenever they have questions.  I will be open and honest as possible and keep a positive aspect on everything.  And hopefully that will help ease some of their concerns about why momma is different.
 
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rubyroselee

New member
I was actually just thinking about this same issue this morning. My son was in the room with me while I was vesting/nebbing and he asked me if I could turn up the TV because he couldn't hear over all my noise. I realized that he really doesn't know what I'm doing and it's just normal to him. He probably thinks that everyone has a mom that has to do what I do...which is just the way kids think at that age. I'm just waiting for the day when he's with one of his friends and he says, "Don't you get aggravated when your mom's vest and medicine is so loud that you can't hear TV?"
But I definitely plan on talking to him (and my other son) about it whenever they have questions. I will be open and honest as possible and keep a positive aspect on everything. And hopefully that will help ease some of their concerns about why momma is different.
 
R

rubyroselee

New member
<p>I was actually just thinking about this same issue this morning. My son was in the room with me while I was vesting/nebbing and he asked me if I could turn up the TV because he couldn't hear over all my noise. I realized that he really doesn't know what I'm doing and it's just normal to him. He probably thinks that everyone has a mom that has to do what I do...which is just the way kids think at that age. I'm just waiting for the day when he's with one of his friends and he says, "Don't you get aggravated when your mom's vest and medicine is so loud that you can't hear TV?"
<p>But I definitely plan on talking to him (and my other son) about it whenever they have questions. I will be open and honest as possible and keep a positive aspect on everything. And hopefully that will help ease some of their concerns about why momma is different.
 
W

windex125

Guest
I keet my secret till my son was abt 12-13 I told him I had bad asthma, I did not feel the need to worry him and also from any friends he made outside of school and their parents as well. I didn't want him to be the kid with the Mom with CF though at 13 he was watching a cable channel show Real Llife in his bedroom which I didn't know and their was a girl on there Frankie and he came out of his room and said Mom do you have what Frankie has a disease called CF and I then sat him down and was honest. I told him I kept myself healthy by doing my treatments and taking meds, and he actually wanted to help with the physicaly therapy on my back prior to getting my vest. There were nights when his Dad was workg OT and I said Nicholas I need you to do this for me, he got very good at it. I am not sure he was ever scared of it? but also told him never play that my Mom is very sick card to get out of trouble in school and he didn't So I think middle school age 12-13 is a good age for them to understand better. But of course eveyone will decide for themselves. Good luck Pat -56/ CF
 
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