Advice Requested

[windex125]

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

 

[windex125]

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

 

[tarheel]

As a teen, I'd say if you wait too long to tell her, she will feel very betrayed- in a way that is irreprable. I don't think having a version of "THE talk" (except not about puberty- about CF) is not the way to approach it, I'd start by involving her with some of your care- I know I NEVER let people see me take all my pills. Then maybe take her to the clinic with you for a "well" visit. If you have any questions, feel free to PM me.

 

[tarheel]

As a teen, I'd say if you wait too long to tell her, she will feel very betrayed- in a way that is irreprable. I don't think having a version of "THE talk" (except not about puberty- about CF) is not the way to approach it, I'd start by involving her with some of your care- I know I NEVER let people see me take all my pills. Then maybe take her to the clinic with you for a "well" visit. If you have any questions, feel free to PM me.

 

[tarheel]

<p>As a teen, I'd say if you wait too long to tell her, she will feel very betrayed- in a way that is irreprable. I don't think having a version of "THE talk" (except not about puberty- about CF) is not the way to approach it, I'd start by involving her with some of your care- I know I NEVER let people see me take all my pills. Then maybe take her to the clinic with you for a "well" visit. If you have any questions, feel free to PM me.

 

[Keepercjr]

in response to April's post - my kids have seen me take my medicine (and sometimes ask to take their pills to - vitamins) and they are always welcome at my clinic visits. They watch me to my PFTs but are usually too bored to stay in the exam room too long (my mom waits down the hall in the waiting area and they migrate back and forth). In fact since my clinic is 3 hours away we make a mini trip out of it and spend at least 1 night. If it were local I guess they wouldn't need to be included so much but I have not been really ill since I had them so I haven't had any difficult visits. But if I knew I was sick and would need a hospitalization or IVs I would prepare them beforehand anyway.

Leah - we have the "turn up the TV I can't hear it!!" issue at my house too LOL! And my little one likes to turn my machines on and off for me - and sometimes even feed me my pills <img src="i/expressions/face-icon-small-smile.gif" border="0">

We, as parents who have CF, need to maintain positive attitudes around our children regarding this disease. "Yes I have CF but I am doing everything I can to stay healthy so don't you worry about it". The less burden they feel they have to carry the better.

 

[Keepercjr]

in response to April's post - my kids have seen me take my medicine (and sometimes ask to take their pills to - vitamins) and they are always welcome at my clinic visits. They watch me to my PFTs but are usually too bored to stay in the exam room too long (my mom waits down the hall in the waiting area and they migrate back and forth). In fact since my clinic is 3 hours away we make a mini trip out of it and spend at least 1 night. If it were local I guess they wouldn't need to be included so much but I have not been really ill since I had them so I haven't had any difficult visits. But if I knew I was sick and would need a hospitalization or IVs I would prepare them beforehand anyway.

Leah - we have the "turn up the TV I can't hear it!!" issue at my house too LOL! And my little one likes to turn my machines on and off for me - and sometimes even feed me my pills <img src="i/expressions/face-icon-small-smile.gif" border="0">

We, as parents who have CF, need to maintain positive attitudes around our children regarding this disease. "Yes I have CF but I am doing everything I can to stay healthy so don't you worry about it". The less burden they feel they have to carry the better.

 

[Keepercjr]

in response to April's post - my kids have seen me take my medicine (and sometimes ask to take their pills to - vitamins) and they are always welcome at my clinic visits. They watch me to my PFTs but are usually too bored to stay in the exam room too long (my mom waits down the hall in the waiting area and they migrate back and forth). In fact since my clinic is 3 hours away we make a mini trip out of it and spend at least 1 night. If it were local I guess they wouldn't need to be included so much but I have not been really ill since I had them so I haven't had any difficult visits. But if I knew I was sick and would need a hospitalization or IVs I would prepare them beforehand anyway.
<br />
<br />Leah - we have the "turn up the TV I can't hear it!!" issue at my house too LOL! And my little one likes to turn my machines on and off for me - and sometimes even feed me my pills <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />We, as parents who have CF, need to maintain positive attitudes around our children regarding this disease. "Yes I have CF but I am doing everything I can to stay healthy so don't you worry about it". The less burden they feel they have to carry the better.

 

[scanboyd]

Our  children are 35, we have never talked about when any of us are going to die. Except that when we do die, heaven is where we want to go. They know dad has to do what he does becasue of CF. The only person who knows when any of us are goignto die is God. We end most of our conversation with a I love you, because we never now if we will have that next conversation on planet earth. The children are postive people as well as the wife and I. Attitude is very important as previously discussed on this forum. So with that said enjoy living life to it's fullest. We are all going to die. One hundred yrs. from now most likely we are "all" going to be dead. In the big picture (eternity) is what we should be concerned with.
Have a great wk CFers<img src="i/expressions/face-icon-small-smile.gif" border="0"> God is Good and he is a forgiving God!!
Just as a side note, our children are adopted also, they were 3 days old when we got them. I see that some of you have adopted children. Congrats!! When our children were teenagers they would bring friends over to the house, and I would be taking neb. treatments,  they would explain what I was doing. That I had to do this to keep cleaned out. Interesting converstations. That was 15-20 yrs. ago. Nothing to hide or be ashamed of. As bad as it is some times, Life is Good!

 

[scanboyd]

Our children are 35, we have never talked about when any of us are going to die. Except that when wedo die, heaven is where we want to go.They know dad has to do what he does becasue of CF. The only person who knowswhen any of us are goignto dieis God. We end most of our conversation with a I love you, because we never now if we will have that next conversation on planet earth. The children are postive people as well as the wife and I. Attitude is very important as previously discussed on this forum. So with that said enjoy living life to it's fullest. We are all going to die. One hundred yrs. from now most likely we are "all" going to be dead. In the big picture (eternity) is what we should be concerned with.
Have a great wk CFers<img src="i/expressions/face-icon-small-smile.gif" border="0"> God is Good and he is a forgiving God!!
Just as a side note, our children are adopted also,they were 3 days oldwhen we got them. I see that some of you have adopted children. Congrats!! When our childrenwere teenagers they would bring friends over to the house, and I would betaking neb. treatments, they would explain what I was doing. That I had to do this to keep cleaned out. Interesting converstations. That was 15-20 yrs. ago. Nothing to hide or be ashamed of. As bad as it is some times, Life is Good!

 

[scanboyd]

<p>Our children are 35, we have never talked about when any of us are going to die. Except that when wedo die, heaven is where we want to go.They know dad has to do what he does becasue of CF. The only person who knowswhen any of us are goignto dieis God. We end most of our conversation with a I love you, because we never now if we will have that next conversation on planet earth. The children are postive people as well as the wife and I. Attitude is very important as previously discussed on this forum. So with that said enjoy living life to it's fullest. We are all going to die. One hundred yrs. from now most likely we are "all" going to be dead. In the big picture (eternity) is what we should be concerned with.
<p>Have a great wk CFers<img src="i/expressions/face-icon-small-smile.gif" border="0"> God is Good and he is a forgiving God!!
<p>Just as a side note, our children are adopted also,they were 3 days oldwhen we got them. I see that some of you have adopted children. Congrats!! When our childrenwere teenagers they would bring friends over to the house, and I would betaking neb. treatments, they would explain what I was doing. That I had to do this to keep cleaned out. Interesting converstations. That was 15-20 yrs. ago. Nothing to hide or be ashamed of. As bad as it is some times, Life is Good!

 

[beleache]

Hi Ana,  
We spoke about this on my Mothers Day post lol ..  I kinda feel you give what is needed at the time, kinda like the bird & the bees questions..  Dont offer more than necessary ..
As they get older I would increase info as questions are asked..  I always try to assure my children that I am doing all I can to stay as healthy as I can for as long as I can..
 My kids are all adults now so they do ask some pretty hard questions & I do my best to answer as best I can..
 I feel no one, healthy or not knows what will happen on a day to day basis..  Just enjoy your life & dont take it for granted !
  Take care  <img src="i/expressions/heart.gif" border="0">  joni

 

[beleache]

Hi Ana,
We spoke about this on my Mothers Day post lol .. I kinda feel you give what is needed at the time, kinda like the bird & the bees questions.. Dont offer more than necessary ..
As they get older I would increase info as questions are asked.. I always try to assure my children that I am doing all I can to stay as healthy as I can for as long as I can..
My kids are all adults now so they do ask some pretty hard questions & I do my best to answer as best I can..
I feel no one, healthy or not knows what will happen on a day to day basis.. Just enjoy your life & dont take it for granted !
Take care <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

<p>Hi Ana,
<p>We spoke about this on my Mothers Day post lol .. I kinda feel you give what is needed at the time, kinda like the bird & the bees questions.. Dont offer more than necessary ..
<p>As they get older I would increase info as questions are asked.. I always try to assure my children that I am doing all I can to stay as healthy as I can for as long as I can..
<p>My kids are all adults now so they do ask some pretty hard questions & I do my best to answer as best I can..
<p>I feel no one, healthy or not knows what will happen on a day to day basis.. Just enjoy your life & dont take it for granted !
<p> Take care <img src="i/expressions/heart.gif" border="0"> joni

 

[kiwilady]

Ana, I have been reading your thread with interest. It's great to see you have had many helpful and varied points of view to ponder over.

I have just spent a good week with my son, who reminds me he will be middle-aged next month... We reflected on my current health status, after receiving a fairly pleasing report from my CF Clinic on Monday.

My son has not been burdened with the possibility of my early death, he has pretty much breezed through life, knowing that his Mum has bung lungs. He has witnessed the daily impact that CF has had on my life. He is probably more aware of the fragility of life, with the knowledge that I lost a brother and sister to the disease.

Yes, I agree you are doing the right thing by protecting your daughter's young mind. Joni's right. ''No one knows what's going to happen on a day to day basis.''

Cheers
Eileen.

 

[kiwilady]

Ana, I have been reading your thread with interest. It's great to see you have had many helpful and varied points of view to ponder over.

I have just spent a good week with my son, who reminds me he will be middle-aged next month... We reflected on my current health status, after receiving a fairly pleasing report from my CF Clinic on Monday.

My son has not been burdened with the possibility of my early death, he has pretty much breezed through life, knowing that his Mum has bung lungs. He has witnessed the daily impact that CF has had on my life. He is probably more aware of the fragility of life, with the knowledge that I lost a brother and sister to the disease.

Yes, I agree you are doing the right thing by protecting your daughter's young mind. Joni's right. ''No one knows what's going to happen on a day to day basis.''

Cheers
Eileen.

 

[kiwilady]

Ana, I have been reading your thread with interest. It's great to see you have had many helpful and varied points of view to ponder over.
<br />
<br />I have just spent a good week with my son, who reminds me he will be middle-aged next month... We reflected on my current health status, after receiving a fairly pleasing report from my CF Clinic on Monday.
<br />
<br />My son has not been burdened with the possibility of my early death, he has pretty much breezed through life, knowing that his Mum has bung lungs. He has witnessed the daily impact that CF has had on my life. He is probably more aware of the fragility of life, with the knowledge that I lost a brother and sister to the disease.
<br />
<br />Yes, I agree you are doing the right thing by protecting your daughter's young mind. Joni's right. ''No one knows what's going to happen on a day to day basis.''
<br />
<br />Cheers
<br />Eileen.
<br />
<br />

 

[StillFighting]

Eileen,

I responded in the Mother Day thread before I read this one. I had wanted to know how your CF clinic visit went. I am pleased to see that you had a fairly good report.

Keep on fighting the Fight. You give me much hope.

Ana

 

[StillFighting]

Eileen,

I responded in the Mother Day thread before I read this one. I had wanted to know how your CF clinic visit went. I am pleased to see that you had a fairly good report.

Keep on fighting the Fight. You give me much hope.

Ana

 

[StillFighting]

Eileen,
<br />
<br />I responded in the Mother Day thread before I read this one. I had wanted to know how your CF clinic visit went. I am pleased to see that you had a fairly good report.
<br />
<br />Keep on fighting the Fight. You give me much hope.
<br />
<br />Ana