RE: Question for

[Guest guest]

now this is a good question. i don't remember the time that when our

parents told me. it seems to me like i have always known the fact that

NATALIA HAS CF. the reason why i wrote this is that i knew the fact, but

for most of my life natalia has been relatively well so i knew, but it

didn't require much of me. it required lots from our parents, but i was

just her brother and tried to treat her like i think you would any sister.

this means we fought, we had our bad moments (some longer than others), and

i really thought i understood it. when i was at the end of university (i am

4.5 years older than natalia), things began to change. as you grow up you

start understanding things that you didn't and natalia's conditione became

worse. i started to think about it more and it seems everytime natalia had

a setback i would really know the fact that NATALIA HAS CF, realizing that i

had no idea before. this would happen again and again. the funny thing is

(and it's not haha kind of funny) is that you feel stupid, because you would

think, did i just not know, not care.... lots of questions like this. but

i think that's why cf is so tough. after natalia would get better and she

would be her positive fun self, i could put the thoughts away and almost

" forget " again. don't get me wrong, the thoughts and knowledge was always

there, but for a lot of the time you could put it away. i also think that

was ok since i tried not to treat natalia a lot differently than anyone

else. in the last little while as things have really changed, the realities

of CF came in full force. now i feel like i really know. as natalia will

say i'm a very positive and optimistic person (life is just too short to be

any other way, so i really don't think being any other way is an option), so

i have ability to change and adapt to the situation as it changes. as for

any brothers and sisters out there that are watching this, i would really

involve them in CF from the beginning, the disease effects natalia the most

(by far), but the rest of us can really help and need to be kept in. i

think my parents kept me away too long, or maybe i stayed away too long (not

sure yet which one it is), but i would encourage the parents to do this as a

family, that means everyone. it makes everything easier and makes the

people involved " BETTER PEOPLE " . anyway, that's my 2 cents worth.

john

Question for

Hi ,

First of all I want to tell you that I really appreciate your posts

and that you have " jumped in " . My son is 13 years old and his sister

wcf is 10. They have a great relationship, and they both care about

eachother. Now, Ian knows his sister has a disease, but I do not

think that he knows exactly the extent of it. How and at what age

did you discover the severity of Natalia's disease? I guess with her

being diagnosed young, you have alwyas been around it. However I

guess I am curious as to how you reacted when you first learned just

how bad things could/would get for her.

Thanks for your honesty and input!

e

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