Advice Requested

S

StillFighting

New member
Hi Everyone,
My daughter is now 8 and is beginning to ask questions about my treatments.  I have chosen to not yet tell her the mortality issue that we face.  I want her to enjoy her youth without worrying.
At what age should we start approaching the subject.
How do we even bring up the topic?
 
Ana
 
 
S

StillFighting

New member
Hi Everyone,
My daughter is now 8 and is beginning to ask questions about my treatments. I have chosen to not yet tell her the mortality issue that we face. I want her to enjoy her youth without worrying.
At what age should we start approaching the subject.
How do we even bring up the topic?

Ana
 
S

StillFighting

New member
<p>Hi Everyone,
<p>My daughter is now 8 and is beginning to ask questions about my treatments. I have chosen to not yet tell her the mortality issue that we face. I want her to enjoy her youth without worrying.
<p>At what age should we start approaching the subject.
<p>How do we even bring up the topic?
<p>
<p>Ana
<p>
 
M

marcijo

Guest
My kids have known all along about my CF....although they don't know the mortality issue. They just know I cough a lot more than normal and that I do my treatments. They probably think it is normal and will be shocked when they find out other parents don't do the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I tell them I do my treatments to keep myself healthy-because if I don't I get sick and have to take more medicine, as well as cough a lot more.
 
M

marcijo

Guest
My kids have known all along about my CF....although they don't know the mortality issue. They just know I cough a lot more than normal and that I do my treatments. They probably think it is normal and will be shocked when they find out other parents don't do the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I tell them I do my treatments to keep myself healthy-because if I don't I get sick and have to take more medicine, as well as cough a lot more.
 
M

marcijo

Guest
My kids have known all along about my CF....although they don't know the mortality issue. They just know I cough a lot more than normal and that I do my treatments. They probably think it is normal and will be shocked when they find out other parents don't do the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I tell them I do my treatments to keep myself healthy-because if I don't I get sick and have to take more medicine, as well as cough a lot more.
<br />
 
B

Brad

New member
Hi Ana I don't know how old your Daughter is, but waiting until early teens is ok, in my opinion. The reason I say this is that when I was 8 I was DX and while in the outer office I heard the Doctor tell me Mother that I would not make it to 12 yrs old. This of course scared the h ell out of me. But because I also heard my Mother get upset I never said anything to Her. So I had that in my head everyday.
 
B

Brad

New member
Hi Ana I don't know how old your Daughter is, but waiting until early teens is ok, in my opinion. The reason I say this is that when I was 8 I was DX and while in the outer office I heard the Doctor tell me Mother that I would not make it to 12 yrs old. This of course scared the h ell out of me. But because I also heard my Mother get upset I never said anything to Her. So I had that in my head everyday.
 
B

Brad

New member
<p>Hi Ana <br /> <br /> I don't know how old your Daughter is, but waiting until early teens is ok, in my opinion. <br /> <br /> The reason I say this is that when I was 8 I was DX and while in the <br /> outer office I heard the Doctor tell me Mother that I would not make it to 12 yrs old. <br /> <br /> This of course scared the h ell out of me. But because I also heard my Mother get upset <br /> I never said anything to Her. So I had that in my head everyday. <br /> <br /> <br /> <br /> <br /> <br /> <br />
 
M

mamerth

New member
My son has always known about my CF. He knows about the mortality issue... I don't handle that topic with him (his dad does).
 
M

mamerth

New member
My son has always known about my CF. He knows about the mortality issue... I don't handle that topic with him (his dad does).
 
M

mamerth

New member
My son has always known about my CF. He knows about the mortality issue... I don't handle that topic with him (his dad does).
<br />
<br />
 
K

krisjohn53223

New member
My son is 4 and we have never hid anything from him regarding Cf. He has been to 90% of my clinic appointments, he "cheers" me on during PFT's, he visits when I am hospitalized, he programs my IV pump at home and has actually learned how to count backwards by watching the numbers on the pump! When I have bad coughing spats, he is the first one to start clapping my back! The only time he has questioned any of it is when I am inpatient and he wants to know why I have to stay there. We tell him I have dirty lungs and they need to be cleaned extra good. Now, he can tell when I am getting sick and he will tell me that my lungs sound like they are getting dirty again! Also, now that it is starting to warm up (we live in WI) he will ask me if it is warm enough for me to play outside today! Kids pick up on things pretty quickly, sometimes there is no need to really explain if you just include it in your everday life.
 
K

krisjohn53223

New member
My son is 4 and we have never hid anything from him regarding Cf. He has been to 90% of my clinic appointments, he "cheers" me on during PFT's, he visits when I am hospitalized, he programs my IV pump at home and has actually learned how to count backwards by watching the numbers on the pump! When I have bad coughing spats, he is the first one to start clapping my back! The only time he has questioned any of it is when I am inpatient and he wants to know why I have to stay there. We tell him I have dirty lungs and they need to be cleaned extra good. Now, he can tell when I am getting sick and he will tell me that my lungs sound like they are getting dirty again! Also, now that it is starting to warm up (we live in WI) he will ask me if it is warm enough for me to play outside today! Kids pick up on things pretty quickly, sometimes there is no need to really explain if you just include it in your everday life.
 
K

krisjohn53223

New member
My son is 4 and we have never hid anything from him regarding Cf. He has been to 90% of my clinic appointments, he "cheers" me on during PFT's, he visits when I am hospitalized, he programs my IV pump at home and has actually learned how to count backwards by watching the numbers on the pump! When I have bad coughing spats, he is the first one to start clapping my back! The only time he has questioned any of it is when I am inpatient and he wants to know why I have to stay there. We tell him I have dirty lungs and they need to be cleaned extra good. Now, he can tell when I am getting sick and he will tell me that my lungs sound like they are getting dirty again! Also, now that it is starting to warm up (we live in WI) he will ask me if it is warm enough for me to play outside today! Kids pick up on things pretty quickly, sometimes there is no need to really explain if you just include it in your everday life.
 
W

welshwitch

Guest
Hi all,

this has been helpful to me, too! I think about this often, if/when I ever have kids this has really bothered me. Could my kids really be strong enough to handle this? Thank you for your replies, they are super helpful! (And I plan on being around a long, long time <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

welshwitch

Guest
Hi all,

this has been helpful to me, too! I think about this often, if/when I ever have kids this has really bothered me. Could my kids really be strong enough to handle this? Thank you for your replies, they are super helpful! (And I plan on being around a long, long time <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

welshwitch

Guest
Hi all,
<br />
<br />this has been helpful to me, too! I think about this often, if/when I ever have kids this has really bothered me. Could my kids really be strong enough to handle this? Thank you for your replies, they are super helpful! (And I plan on being around a long, long time <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

TonyaH

Guest
Hi there,
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.
 
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!
 
T

TonyaH

Guest
Hi there,
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.

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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