My husband and I just found out that we're both carriers for CF (different mutations, he's Delta F508 and I'm Delta I 507) We're scheduled to see a genetic counselor, but I'm just so overwhelmed by the enormity of it all that I can't sleep and am anxious for answers. My emotions are all over the map. I've gone from being heartbroken at the thought of not being able to have "my own" children to feeling ridiculous for even contemplating not doing so, after seeing how many people are living into midlife and getting married, having kids of their own, etc.
It sounds like living with CF is really challenging and being a parent of someone with such an awful disease is a daunting prospect, but now that i know we could pass this disease on to our children, the idea seems almost irresponsible. I don't know... how does a parent "roll the dice" or "leave it in God's hands," as one of my friends said, when they have to look at a suffering child every day and know that they could have alleviated that suffering. On the other hand, if you believe that each being is a unique combination of nature & nurture, each of my eggs is half of a person unlike any other. Is CF enough of a reason to deny that being life if God would grant it?
Please forgive me if I'm being too moralistic (maybe callous to your situation?) I'm so new to this, I'm just overflowing with all of these questions. And (of course) my husband had retreated into an emotional bubble, surrounded by a barricade of work and football. Family and friends are trying to be supportive but are surprisingly tactless...
So, I guess what I'm wondering is what sort of wisdom y'all can provide. It sounds like some of you who have CF are trying the IVF route. Is this common in the CF community? How did you come to that decision? Did any of you who are parents of CF kids know you were carriers before you had them? If so, what influenced that decision?
It sounds like living with CF is really challenging and being a parent of someone with such an awful disease is a daunting prospect, but now that i know we could pass this disease on to our children, the idea seems almost irresponsible. I don't know... how does a parent "roll the dice" or "leave it in God's hands," as one of my friends said, when they have to look at a suffering child every day and know that they could have alleviated that suffering. On the other hand, if you believe that each being is a unique combination of nature & nurture, each of my eggs is half of a person unlike any other. Is CF enough of a reason to deny that being life if God would grant it?
Please forgive me if I'm being too moralistic (maybe callous to your situation?) I'm so new to this, I'm just overflowing with all of these questions. And (of course) my husband had retreated into an emotional bubble, surrounded by a barricade of work and football. Family and friends are trying to be supportive but are surprisingly tactless...
So, I guess what I'm wondering is what sort of wisdom y'all can provide. It sounds like some of you who have CF are trying the IVF route. Is this common in the CF community? How did you come to that decision? Did any of you who are parents of CF kids know you were carriers before you had them? If so, what influenced that decision?