Am I crazy?

[candiebar76]

I have been running into a lot of this c*@p lately. Most of our family members keep questioning why we are getting all these tests ran on our son. I have been getting comments like "well he doesn't seem sick right now", "he looks just fine", "all the sicknesses thus far are probably just a virus that he kept getting exposed to", and the most common one "I thought he outgrew it." We just got sick of telling everyone so we have delt with it as a family. We have left out all the extended family.

The most frusterating of all was when my Uncle said "you have 3 other children, you don't have the time to put all your energy and effort into just one." Well I know that I have 4 children total, but if he has CF I want to know now, not 5 years from now, so I can make sure he remains as healthy as possible. He even went as far as saying "CF is a terrible disease, if he had it he would probably be dead by now."

My mom gives us a lot of the "he looks good." "There is no way he is sick." " He looks to be a good size for his age, blah, blah, blah.." I tried telling her he is actually only in the 5th% for his age, and his fine motor & other skills are a year behind. No one wants to listen to me eccept for here and my oldest sister that I haven't been very close to for the last few years. She only listens because she has a daughter that is also going thru a bunch of genetic testing and waiting for the results is painful.

How has everyone else handled situations like this? I can't seem to get the subject off my mind. Last night I even dreamt that the DNA test results revealed our fears & Maxwell was dx with CF. Is it normal to be this on edge?
Candace

 

[JazzysMom]

Not knowing is even harder then actually getting the dx. Waiting is torture. Think of things in another aspect also. Not only do you want an answer as to whether your son has CF, but it could open a door for your other children to be tested for being carriers. It expands farther than just whether he has CF or not. Families can be such a$$es at times. My cousin who is an RN asked me the other day (mind you one of just a few stupid comments over recent years) why we dont go to our local hospital or doctor instead of to NYC for care. Well could it be that locals just dont know enough about CF>>>>>UGGG! I am so sorry for the comments & BS that you are dealing with. Please know that no matter what is said or done by others I think (as I am sure most on here do) that you are absolutely correct in following thru. CF is unpredictable as you have probably read. Even tho one thing we all have in common is the CF. The severeity, symptoms & treatments all vary so ANYTHING said based on how he is now doesnt really mean a darn thing. If it was that easy there wouldnt be so many people undiagnosed for years or the difference between early death & those living long lives. Try to take it with a grain of salt & REMEMBER that they really dont know &/or dont care so tho its hurtful to hear......its words! ***HUGS***

 

[Mockingbird]

We all kinda have to go thru that sorta stuff; people tell me, "You don't look that sick, I think you're exaggerating" or sometimes I even get accused of outright faking it. It's times like that I would like to just start coughing up blood on people. That would show 'em! When anyone ever says stuff like that to me, though, I just stop talking to them. Anyone who is not a help is a stumbling block, so maybe just stop answering the phone and cut them off for a while, at least until you reach a better point when you can deal with them.

 

[Alyssa]

Some people are just plain ignorant about things -- chin up.... you are on the right track, don't doubt your instincts. Don't let people like that bother you -- you know you are doing the right thing.