just found out

T

tammykrumrey

Guest
I can say that our children lead a very normal life. They do go to school (we have a 504 plan in place to help with some things such as unlimited bathroom usuage, making up homework when ill, etc.) Both girls are straight A students, and do not miss a lot of school. They are cheerleaders, they dance. They sing in the choir. They have no limits. When they are fighting an infection, they tend to slow down a bit, but that's ok. We work with it and get them back up to where they were.

And we are the same as Rebecca when it comes to letting people know about CF. We do not hide it. I don't want my girls to be ashamed of having CF. It is part of who they are (and we are as a family). And I explain CF to my kids as they ask questions. And I answer the questions in a way that's appropriate for their age. They do know that they will always have it. They used to think that when they grew up it would be gone because they don't know any adults with it. But they understand how important it is to do the things that our CF doctor tells them to do in order to stay healthy and live longer.

Please ask away if you have anymore questions.

I didn't answer about how she got CF because the others have already answered that for you<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

rubiesmom

New member
Thank you guys for your caring words. I know this isn't going to be easy but we're not going to let it get the best of us. Just like you all have said, I dont plan on changing any of Rubies favorite activities, she'll still play soccer and play with her friends and go to camp in the summer. It's not about me, it's about her and how she feels. I've already told our family and closest friends, that was difficult to do cuz it just made it all seem so real. Lately I've been walking around in a fog, it's just alot to deal with all of a sudden. One miniute you have what seems to be a healthy child with a few health concerns and the next, you have a child with cf. I know you all have been there and know how it feels. Thank you for answering my questions and for being there. This is like having a family away from home.
my prayers are with you all.

mom to Rubie 6 (w/cf)
 

rubiesmom

New member
Thank you guys for your caring words. I know this isn't going to be easy but we're not going to let it get the best of us. Just like you all have said, I dont plan on changing any of Rubies favorite activities, she'll still play soccer and play with her friends and go to camp in the summer. It's not about me, it's about her and how she feels. I've already told our family and closest friends, that was difficult to do cuz it just made it all seem so real. Lately I've been walking around in a fog, it's just alot to deal with all of a sudden. One miniute you have what seems to be a healthy child with a few health concerns and the next, you have a child with cf. I know you all have been there and know how it feels. Thank you for answering my questions and for being there. This is like having a family away from home.
my prayers are with you all.

mom to Rubie 6 (w/cf)
 

rubiesmom

New member
Thank you guys for your caring words. I know this isn't going to be easy but we're not going to let it get the best of us. Just like you all have said, I dont plan on changing any of Rubies favorite activities, she'll still play soccer and play with her friends and go to camp in the summer. It's not about me, it's about her and how she feels. I've already told our family and closest friends, that was difficult to do cuz it just made it all seem so real. Lately I've been walking around in a fog, it's just alot to deal with all of a sudden. One miniute you have what seems to be a healthy child with a few health concerns and the next, you have a child with cf. I know you all have been there and know how it feels. Thank you for answering my questions and for being there. This is like having a family away from home.
my prayers are with you all.

mom to Rubie 6 (w/cf)
 
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