Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 I don't know how it feels to be a parent. But I know what it's like not to be able to get away. I did not mean to make you sad with my email. There is so much hope for your little girl. For all kids now with CF. things are changing so fast. Even for me there is so much hope with the transplant. And I always, always say this. I am who I am because I have CF. I would not want to change a thing. It has made me strong and made me appreciate things, and that is a lesson learned. Since I can't change it, I embrace it. And you should too. Embrace the illness, the treatments, and the life that you have been forced to lead. It will be easier to fight, I promise. Let your little see you angry. Not at those treatments, but at the illness. Let her see that you can't fix it either. CF is it's own separate variable. Independent of what you feel or want. But the treatments are a way to kick ass. To move towards something larger. To hold off the sadness until a cure is available, or gene therapy, or a transplant. Get angry with your daughter. Let her see it. And then tell her, this is what we have to do. But I know how it was with me. I tried everything to get out of treatments too. But sometimes I wish my mom and dad would have talked to me about how it made them feel. That they too were angry and sad. But who knows. No regrets. Hang in there. I'm sorry that you had a bad day. Natalia 24 w CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Natalia, This sounds like good advice. You are so wise. It seems strange that someone as young as you has so much wisdom. I wonder if it is due to your lifetime of sealing with cf. I agree that cf has made us better people. I know that Toni and I are much closer as a result of Abby's cf. Anyway, thanks for the post. I will send a copy to Toni. Love, Gale Toni's mom Abby's grandma > I don't know how it feels to be a parent. But I know what it's like > not to be able to get away. I did not mean to make you sad with my > email. There is so much hope for your little girl. For all kids now > with CF. things are changing so fast. Even for me there is so much > hope with the transplant. And I always, always say this. I am who I > am because I have CF. I would not want to change a thing. It has made > me strong and made me appreciate things, and that is a lesson learned. > Since I can't change it, I embrace it. And you should too. Embrace the > illness, the treatments, and the life that you have been forced to > lead. It will be easier to fight, I promise. Let your little see you > angry. Not at those treatments, but at the illness. Let her see that > you can't fix it either. CF is it's own separate variable. > Independent of what you feel or want. But the treatments are a way to > kick ass. To move towards something larger. To hold off the sadness > until a cure is available, or gene therapy, or a transplant. Get angry > with your daughter. Let her see it. And then tell her, this is what > we have to do. > But I know how it was with me. I tried everything to get out of > treatments too. But sometimes I wish my mom and dad would have talked > to me about how it made them feel. That they too were angry and sad. > But who knows. No regrets. > > Hang in there. I'm sorry that you had a bad day. > > Natalia > 24 w CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 I wish that this sight had spell check. I would starve if I had to work as a typist. Gale > > I don't know how it feels to be a parent. But I know what it's > like > > not to be able to get away. I did not mean to make you sad with my > > email. There is so much hope for your little girl. For all kids > now > > with CF. things are changing so fast. Even for me there is so > much > > hope with the transplant. And I always, always say this. I am who > I > > am because I have CF. I would not want to change a thing. It has > made > > me strong and made me appreciate things, and that is a lesson > learned. > > Since I can't change it, I embrace it. And you should too. Embrace > the > > illness, the treatments, and the life that you have been forced to > > lead. It will be easier to fight, I promise. Let your little see > you > > angry. Not at those treatments, but at the illness. Let her see > that > > you can't fix it either. CF is it's own separate variable. > > Independent of what you feel or want. But the treatments are a way > to > > kick ass. To move towards something larger. To hold off the > sadness > > until a cure is available, or gene therapy, or a transplant. Get > angry > > with your daughter. Let her see it. And then tell her, this is > what > > we have to do. > > But I know how it was with me. I tried everything to get out of > > treatments too. But sometimes I wish my mom and dad would have > talked > > to me about how it made them feel. That they too were angry and > sad. > > But who knows. No regrets. > > > > Hang in there. I'm sorry that you had a bad day. > > > > Natalia > > 24 w CF Quote Link to comment Share on other sites More sharing options...
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