What did you tell your children about CF?

[jdprecious]

Jaelyn knows that she has 65roses... she still doesnt say Cystic Fibrosis correctly... so cute... anywho... she knows that she takes her meds everyday to keep her healthy.... everything we do is to keep her healthy... healthy is her favorite word...

Mom can I have a banana. No Jae go to bed. But Mom its healthy for me!!!

She does know that she can get sick and maybe one day die if we dont keep her healthy.. but she also knows that everyone dies one day... so that is why we do what we do everyday. Her grasp is great for a 5 year old. My mother hates it that I am as open with her as I am, but I wont lie to my child. I want her to know why we do what we do so she will always want to do it. Understanding from an early age will hopefully make it no big deal as she gets older. This is what I am hoping for.

 

[jdprecious]

Jaelyn knows that she has 65roses... she still doesnt say Cystic Fibrosis correctly... so cute... anywho... she knows that she takes her meds everyday to keep her healthy.... everything we do is to keep her healthy... healthy is her favorite word...

Mom can I have a banana. No Jae go to bed. But Mom its healthy for me!!!

She does know that she can get sick and maybe one day die if we dont keep her healthy.. but she also knows that everyone dies one day... so that is why we do what we do everyday. Her grasp is great for a 5 year old. My mother hates it that I am as open with her as I am, but I wont lie to my child. I want her to know why we do what we do so she will always want to do it. Understanding from an early age will hopefully make it no big deal as she gets older. This is what I am hoping for.

 

[JazzysMom]

I dont really remember how things went for me. I dont ever remember having "the talk" and I doubt we would have since even today my Mom cant talk more then the basics of my CF without blubbering.

I can say this tho....IMHO it is best to explain as much as possible depending on the level of the childs capability. What would upset me more is "hearing" from others that I was to die early etc & have no idea CF was THAT bad.....

I am matter of factly about my CF with my daughter. I tell her it angers me, but that doesnt change things & we do the best we can. It doesnt always work as I had to point out when I went into the hospital once. She ?? why I had to do that if I was doing my treatments.

Of course.....when she was younger she asked me when I could stop doing my treatments. I laughed & that was the first of many chats about my CF.

 

[JazzysMom]

I dont really remember how things went for me. I dont ever remember having "the talk" and I doubt we would have since even today my Mom cant talk more then the basics of my CF without blubbering.

I can say this tho....IMHO it is best to explain as much as possible depending on the level of the childs capability. What would upset me more is "hearing" from others that I was to die early etc & have no idea CF was THAT bad.....

I am matter of factly about my CF with my daughter. I tell her it angers me, but that doesnt change things & we do the best we can. It doesnt always work as I had to point out when I went into the hospital once. She ?? why I had to do that if I was doing my treatments.

Of course.....when she was younger she asked me when I could stop doing my treatments. I laughed & that was the first of many chats about my CF.

 

[JazzysMom]

I dont really remember how things went for me. I dont ever remember having "the talk" and I doubt we would have since even today my Mom cant talk more then the basics of my CF without blubbering.

I can say this tho....IMHO it is best to explain as much as possible depending on the level of the childs capability. What would upset me more is "hearing" from others that I was to die early etc & have no idea CF was THAT bad.....

I am matter of factly about my CF with my daughter. I tell her it angers me, but that doesnt change things & we do the best we can. It doesnt always work as I had to point out when I went into the hospital once. She ?? why I had to do that if I was doing my treatments.

Of course.....when she was younger she asked me when I could stop doing my treatments. I laughed & that was the first of many chats about my CF.

 

[JazzysMom]

I dont really remember how things went for me. I dont ever remember having "the talk" and I doubt we would have since even today my Mom cant talk more then the basics of my CF without blubbering.

I can say this tho....IMHO it is best to explain as much as possible depending on the level of the childs capability. What would upset me more is "hearing" from others that I was to die early etc & have no idea CF was THAT bad.....

I am matter of factly about my CF with my daughter. I tell her it angers me, but that doesnt change things & we do the best we can. It doesnt always work as I had to point out when I went into the hospital once. She ?? why I had to do that if I was doing my treatments.

Of course.....when she was younger she asked me when I could stop doing my treatments. I laughed & that was the first of many chats about my CF.

 

[JazzysMom]

I dont really remember how things went for me. I dont ever remember having "the talk" and I doubt we would have since even today my Mom cant talk more then the basics of my CF without blubbering.

I can say this tho....IMHO it is best to explain as much as possible depending on the level of the childs capability. What would upset me more is "hearing" from others that I was to die early etc & have no idea CF was THAT bad.....

I am matter of factly about my CF with my daughter. I tell her it angers me, but that doesnt change things & we do the best we can. It doesnt always work as I had to point out when I went into the hospital once. She ?? why I had to do that if I was doing my treatments.

Of course.....when she was younger she asked me when I could stop doing my treatments. I laughed & that was the first of many chats about my CF.

 

[JazzysMom]

I dont really remember how things went for me. I dont ever remember having "the talk" and I doubt we would have since even today my Mom cant talk more then the basics of my CF without blubbering.

I can say this tho....IMHO it is best to explain as much as possible depending on the level of the childs capability. What would upset me more is "hearing" from others that I was to die early etc & have no idea CF was THAT bad.....

I am matter of factly about my CF with my daughter. I tell her it angers me, but that doesnt change things & we do the best we can. It doesnt always work as I had to point out when I went into the hospital once. She ?? why I had to do that if I was doing my treatments.

Of course.....when she was younger she asked me when I could stop doing my treatments. I laughed & that was the first of many chats about my CF.