I guess if the man would have said yes to any of those she would have rescinded her offer. Anytime I hear about Cystic Fibrosis in the media especially on television when it's not for awareness purposes I always feel like it's in a negative light.
Like that woman wouldn't have wanted a child with Cystic Fibrosis. Now I know this is all fictional in this case but there are people out there who really feel this way. And I suppose there is nothing wrong with everyone having an opinion, but I take offense when I have a child with Cystic Fibrosis and others imply that they would just assume not pro-create if CF was a possibility.
I know that for some Cyster's or families of carriers they chose not to have children. But for me and my family we are walking on the path that was set out for us. And Cystic Fibrosis is part of the foundation. Of course if we could have we would have prevented Ayla having CF. But the truth is we can't. But we don't want CF or any other "genetic" trait to prevent our family from going where it needs to go. I don't want CF to prevent Ayla from having a sibling.
I guess this really hit a nerve with me today...I felt so offended when the woman in this tv show said that. Those people who have kids with special needs or have special needs themselves can't possibly make others understand how it is to live life.
We all know it sucks to have CF, it sucks to be a carrier of CF....But it sucks even worse to be a parent of a child with CF and have the media display the disease in this way..Like it's a choice...you can't genetically design your children to be what you want them to be. And CF is not a removable part of our lives. Without CF we wouldn't have Ayla....without Ayla we wouldn't have CF, they are a package that come hand in hand.
This post may not portray the way everyone dealing with CF feels but it's how I feel and I felt I had to speak my mind.
I wonder how it makes other CF families feel when they see CF in the media,being portrayed in a negative way?
~krista
Posts
I always love hearing your opinion Krista and you have ever right to put it out there! However, I have to say that I (respectfully!) don't agree with you on this issue. finding out we were carriers changed everything for me and my husband. To me, CF more then sucks and I don't know what the future holds for my family but I pray about it everyday and know that no matter what we decide, it'll be best for my family. I don't have CF and I don't think it's fair to knowingly put that on my child. To me, that isn't putting CF in a negative light. It's the reality of some people's decision and in a way I can understand where she is coming from.
ReplyDeleteBut I know this is a personal issue and many families feel differently. YOU know what is best for your family and I completely respect your decisions. I just feel another way but that's why I love blogging. I get to hear your opinion and reflect on it :)
Much love to you and your family!
Thanks for your opinion Margeaux! It's so interesting to hear how ppl in the CF comm feel on certain "hot button" issues. Thats right we all don't have to agree but can fight toward a common goal...A cure for this for our babies!! I appreciate you weighing in on this :0) Hope Ben & family is doing great!!
ReplyDeleteI agree that every CF carrier has the right to determine for themselves if having children naturally is or is not for them. What burns my biscuits is when people call us names for deciding to go ahead and have children. I've read posts from those who call us uninformed, selfish, negligent and hateful. One nurse even commented that it should be illegal to procreate! What?!
ReplyDeleteLike you said, our children come as they come, disease or no disease. That does not make them any more or less of a blessing or worthy of life. My philosophy is that God is going to give you what he gives you. And if he gives you a child with special needs, he must know that you're capable to handle it. Just my two cents...
I completely agree with you Krista. I have a friend who is considering not having any children because of the fear of them having some sort of disability after seeing what we go through with Drew. I get it, its hard work having a kid with any sort of disability, but they have just as much right to be here and to be loved as you or I. I hate it when someone says that we "put it on them", as though I knowingly willed CF upon my child. I wish he didn't have it, but its not going to stop me from having more children! There's always a chance that any of our children would be affected by this terrible disease. There's a chance our children could be affected by other diseases. But who knows what these kids have to offer the world and whose business is it telling us that we should or shouldn't have them. I'm with you on this one Krista. Unless you are in my shoes you will really never understand.
ReplyDeletethanks for all the great point of views everyone!! I love reading each of them!
ReplyDeleteIn my opinion if you know you are a carrier and you have more children and they end up with CF, you did put it on them. I'm not saying you wanted it that way but that's the way it worked out. No way around it.
ReplyDeleteI don't think there's any right way for carriers to continue on their family. Only what's right for each individual family. I would never judge what one family does as I hope no one would judge me.
Well clearly- each induvidual sees this differently. Thanks for everyones opinions, some I agree with and some I don't. But I know each opinion represents a portion of the CF comm. My post says how I feel so no need to comment back and forth upon reading each comment. Thanks again everyone for getting your point of view out there.
ReplyDeleteThank you for starting this discussion Krista!! Even if I don't agree with some, I do like hearing where other people are coming from. Gives me things to think about!
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