I have been trying to stay positive about this whole cystic fibrosis with my baby girl but you know, something as tiny as a few words sure can get me sick to my stomach very quickly! Everyday I am searching for information, resources, education, anything that will help me understand this disease more. I don't think I will ever understand it, or why it's happening to my sweet girl! I signed up for a newsletter from a website that is informative and even helps with checklists to print out to help know what questions to ask our cf specialist. I can't read enough about cf, even though some of it is repeated over and over again I still learn something new everyday. Today in that newsletter it said this in the midst of the information I was reading about why it's so important to start early treatments, "you should know that cystic fibrosis can harm the lungs even if few or no symptoms are apparent. This is because the cycle of cystic fibrosis progression may have already begun before cystic fibrosis symptoms are noticed, and damage could possibly occur even though it is not seen or felt."... Now that is the words that really upset me tonight. Obviously this is what they have been getting at with our doctor visits. This also raises the question again about whether or not we need to have the other girls tested. Well, actually it gives me the answer - but I don't feel like I can handle doing that right now.
I have convinced myself that if Lindsey has no signs or symptoms then she is just fine. Now I am worried that destruction is going on in her sweet little body that we don't even know about. I guess, as I have said before I am just so scared for her future. But, at the same time with all that I am learning I am sure she can/will have a very normal life. And if they start treatments on her early it will just be life as she knows it, right? So, I guess what I'm hoping is that this journey is harder on me than it is on her.
Calgon take me away...
Dear Rose Bundle
3 hours ago