Abby,
I don't really have any words of wisdom here, just empathy. My daughter (just turned seven) asked almost identical questions of me this week. Like others have said, we try to encourage her to see CF as something she has, but not something that defines her, and we talk a lot about other children we know who also have special things they have to do to stay healthy, like a neighbor with a life-threatening peanut allergy and a friend with diabetes.
As to the larger question of why, I simply tell the truth (for me), which is that I can't tell her why, and that we don't always know why things happen to us. What matters is what choices we make with the events we are given, and the ways we choose to make them meaningful.
As an aside, I find it hard to know how much to tell her, and when, when it comes to the nastier side of CF. Because her sister also has CF, she is really only starting to learn that CF is not 'normal'. I am certain she does not really understand yet what the diagnosis will mean in the long term, since so far, it has only meant treatments and one hospitalization. We have decided to let her understanding of the diagnosis evolve "organically" and over time; I have no idea if that is the "right" choice, but it is what feels right. I am curious to hear from others about how much -- and when -- you say about the life-shortening aspect. We have focused more on the idea that she has to do extra work to keep her lungs clean, but not really gone beyond the idea that if she does not, it will grow harder and harder for her to breathe over time. I am not sure when that will no longer be enough.
I don't really have any words of wisdom here, just empathy. My daughter (just turned seven) asked almost identical questions of me this week. Like others have said, we try to encourage her to see CF as something she has, but not something that defines her, and we talk a lot about other children we know who also have special things they have to do to stay healthy, like a neighbor with a life-threatening peanut allergy and a friend with diabetes.
As to the larger question of why, I simply tell the truth (for me), which is that I can't tell her why, and that we don't always know why things happen to us. What matters is what choices we make with the events we are given, and the ways we choose to make them meaningful.
As an aside, I find it hard to know how much to tell her, and when, when it comes to the nastier side of CF. Because her sister also has CF, she is really only starting to learn that CF is not 'normal'. I am certain she does not really understand yet what the diagnosis will mean in the long term, since so far, it has only meant treatments and one hospitalization. We have decided to let her understanding of the diagnosis evolve "organically" and over time; I have no idea if that is the "right" choice, but it is what feels right. I am curious to hear from others about how much -- and when -- you say about the life-shortening aspect. We have focused more on the idea that she has to do extra work to keep her lungs clean, but not really gone beyond the idea that if she does not, it will grow harder and harder for her to breathe over time. I am not sure when that will no longer be enough.