Hi I am new here and have a four year old who has cf. My story so far is she has had pseudomodus twice once when she was four months old and then just last summer, this was our 1st admission to hospital. It was a real shock as I knew that day might come but really was never ready for it.
I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.
Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.
They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.
I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.
I feel I can no longer trust them so I have now decided after years of trying to go our own way.
I am sorry to rant but here is an outlet for me.
I just feel the only people that understand are people in the same situation.
I feel much better for talking about this and just want to be around people who understand.
Thanks for listening
Lillytree
I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.
Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.
They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.
I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.
I feel I can no longer trust them so I have now decided after years of trying to go our own way.
I am sorry to rant but here is an outlet for me.
I just feel the only people that understand are people in the same situation.
I feel much better for talking about this and just want to be around people who understand.
Thanks for listening
Lillytree