some people

[anonymous]

Does anyone else wonder what peolpe are thinking when they say things to you about cf or health? For example sitting in the hospital with my baby my brother tells me one second he couldn't be in my place and the next tells me he'd give anything to have dying babies. He cares so little that is how he thinks of the disease has never taken the time to learn anything about it. I tell him all the time everyone is dying it is the one sure thing in life. I want to scream at him. He and his wife are trying with no luck. I needed help to have mine. I was on bedrest and endured nine months of doctors telling me I might not make it . They are thinking about getting help and say they will not tell their doctor about cf in our family and would like twins or more.
<img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[buggygurl321]

Ok, first of all, that's pretty shallow and mean of your brother.
Second, he's putting his future children in danger by not telling the doctors about the CF gene so they can take the necessary precautions. Sheesh! Seriously, I am so sorry that he acted like that to you!!!! <img src="i/expressions/brokenheart.gif" border="0">

 

[CFHockeyMom]

It always amazes me how insensitive (or stupid) people can be when discussing CF with me. I just try to believe that they are trying to be comforting in some way and the words are just coming out wrong.

We have lots of family that hasn't bothered to tell their Dr's about CF in the family. It's ignorant but there's little you can do. Some people prefer to go through life with blinders on. <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Mockingbird]

He'd give anything to have dying babies? What does that mean?

 

[anonymous]

Well that is how he thinks of my kids that they are not gonna live. He had 3 healthy kids all of them without even trying. So now that he wants more and is having a hard time he acts mad because I have 2 small kids. My youngest isn't doing well and the doctors have made the fact very clear.

 

[Purplelungs]

He should be greatful for what he has. At first I thought you meant they couldnt have kids at all....he is lucky he even has one child...many people never even get to have one. What does he want all the attention or something? Next time just yell at him....we said so we are living...yes its a harder life, we have to try harder...but we also have something speciall...never taking things forgranted, thinking every moment is special...something he obviously will never get...if he did he woulnt be so angry he cant have a 4th 5th or 6th child...he would love every minute with his kids now watch them grow and learn, discover things, graduate...the more kids he has sometimes the less time you have to be with each one.

If anything else just remember he doesnt know what he is talking about...even though it makes you soo angry you want to hit him...remind yourself its just ignorance. Sometimes that makes it worse but stupid people cant help but be stupid.

 

[anonymous]

I think you should tell your brother to take the time to learn a little about CF before he opens his mouth and make ridiculous comments like that.
His suffering at not being able to have any more children is nothing compared to what you and your children will have to go through.
And if it was me I would say that to his face.
Nobody wants to watch their children decline and if given the choice I bet he wouldn't either.
It sounds like he is feeling very sorry for himself.
Rebekah
Mother to Matt 2 yrs w/CF and Ella 3 weeks wo/CF