RunFromLife

Theres multiple things. First is appetite. Cf takes a tole on it, and through his life he was never a really big eater. My parents always fed him whatever he wanted because it ment food in his stomach. Another is digestion. His stomach just doesn't want to digest food, so he has to take pill with every meal he its or his stomach gets very upset. The last one I know about us metabolism. CF causes him to have a very high metabolism, and causes him to get thin.

He got a tube implanted in his stomach to provide this almost protein shake type deal (not at all like it but that's all I know to compare it to) during the night to give him the nutrients he needs due to lack of eating and other things. So every night he gets this fluid pumped into him.

I agree, kids are very smart. I'd let her know that germs don't affect him the same way they affect everyone else, and let her know that his immune system is weak. Let her know that all because there's a lot of doctor visits, and hospital visits that there isn't something to be worried about. That all this comes with CF, and it isn't because he's "sick" but it's to simply to help his body fight a battle.

All this is coming from a sibling that has lived every day knowing what's going on. Never let her feel like its a negative thing. Same with him. My parents never made my brother feel as if he was anything less or "sick". This disease doesn't make the patients weaker. It simply makes them, and their family stronger. Don't let him view himself as sick.

I know for a fact my brother isn't sick. My brother has done amazing things. He hikes, rock climbs, runs, rides dirt bikes, and anything physical you could think of. He isn't sick. He's simply challenged every day, and every day he wins against CF.

Growing up with my brother having cf I was never sat down and straight forwardly told my brother has a deadly disease. I was told cf affected his health, his lungs, and that a lot of people with CF live normal lives.

My brother never wanted to be treated as "the sick kid", so until he left for college he always hid that he had cf and a tube. He doesn't openly tell people he has a tube now, but he doesn't hide it.

I'm 18, and my older brother is 26 with CF. I've grown up not understanding what the disease does. Until about 2 years ago I was clueless the life expectancy (at the time) was 28-30. I was heart broken, and torn to pieces. My brother is my life, and if I lost him I'd be shattered. The only thing that has pushed me through is Jesus Christ. My brother has been out of the hospital for a while now, and is extremely healthy. God is doing work in our lives, and with out him my brothers life would have been extremely difficult. Even now it is difficult, but it's better then we could have hoped.

CF is one of the worst things. The thought the my brothers lungs are killing him makes me not want to leave his side, but knowing God is fighting the battle for him makes everything okay.

How are you accepting everything? And couping?