Thank all of ya'll for your stories. You all have beautiful children.
I also feel like it is harder for me than my husband. Before we got the results, we had decided what we needed to do and I told him not to let me change my mind if it came to that. But now, of course, I just can't stand the thought of NEVER having the option. I'm 26!! Who decides at 26 never to have more children. I know we are so blessed to have our daughter and that she's healthy. I feel like this is so unfair. I know I shouldn't complain when at least I know we're carrires and so many didn't know and now have children with cf. But I've been affected by this my whole life. My sister, Valarie, was 4 1/2 years older than me and was dx about the time I came along. So my whole life IT has been there. While I was pregnant Valarie was in the hospital and I couldn't go see her. I was afraid my baby might have it and just couldn't handle it. I lived 5 hours away, and of course that was a good excuse. And she was in quarintine part of the time. But the bottom line was I just couldn't handle it. Couldn't handle her being sick, her dying, and especially that my baby could have the same thing. I know that sounds incredibly selfish, but I just felt like it was all too much. She died 2 weeks after I had my baby, and we were still waiting on Madeline's(the baby) results at that time. When my mom called to say Valarie had died, the first thought I had was I couldn't go to the funeral. And I didn't. MY mom and aunt both called and said I should stay home and take care of the baby, so that was my "excuse". I had old friends showing up at the visitation and services to support me and I wasn't even there. I know they all had to think I was selfish or just didn't care or at least that not coming was the wrong decision, but I just could't handle it. The funeral was on a Monday morning, and I was rocking my baby watching the Price is Right and just crying the whole time the funeral was going on. THat was two years ago and here I am again. This THING is in my life again.
I'm sorry for going on like that, but no one who hasn't delt with this could ever understand. And Valarie was born in1976 and lived to the age of 29 and I know medicine is so much better now. When she was a kid, she had a medicine called Pancrease, I guess that was enzymes, and my parents did clapping. (A manual alternative to the vest). She never used inhalers or Tobi until she was grown. I know it is much different for kids today with cf, but how hard is it? How good is the medicine?
I also feel like it is harder for me than my husband. Before we got the results, we had decided what we needed to do and I told him not to let me change my mind if it came to that. But now, of course, I just can't stand the thought of NEVER having the option. I'm 26!! Who decides at 26 never to have more children. I know we are so blessed to have our daughter and that she's healthy. I feel like this is so unfair. I know I shouldn't complain when at least I know we're carrires and so many didn't know and now have children with cf. But I've been affected by this my whole life. My sister, Valarie, was 4 1/2 years older than me and was dx about the time I came along. So my whole life IT has been there. While I was pregnant Valarie was in the hospital and I couldn't go see her. I was afraid my baby might have it and just couldn't handle it. I lived 5 hours away, and of course that was a good excuse. And she was in quarintine part of the time. But the bottom line was I just couldn't handle it. Couldn't handle her being sick, her dying, and especially that my baby could have the same thing. I know that sounds incredibly selfish, but I just felt like it was all too much. She died 2 weeks after I had my baby, and we were still waiting on Madeline's(the baby) results at that time. When my mom called to say Valarie had died, the first thought I had was I couldn't go to the funeral. And I didn't. MY mom and aunt both called and said I should stay home and take care of the baby, so that was my "excuse". I had old friends showing up at the visitation and services to support me and I wasn't even there. I know they all had to think I was selfish or just didn't care or at least that not coming was the wrong decision, but I just could't handle it. The funeral was on a Monday morning, and I was rocking my baby watching the Price is Right and just crying the whole time the funeral was going on. THat was two years ago and here I am again. This THING is in my life again.
I'm sorry for going on like that, but no one who hasn't delt with this could ever understand. And Valarie was born in1976 and lived to the age of 29 and I know medicine is so much better now. When she was a kid, she had a medicine called Pancrease, I guess that was enzymes, and my parents did clapping. (A manual alternative to the vest). She never used inhalers or Tobi until she was grown. I know it is much different for kids today with cf, but how hard is it? How good is the medicine?