Living with cystic fibrosis

Faust

New member
BTW Ender, as one friend to another, *lease never use the letter * again (the one that follows O in our alphabet), it really hurts me when I see that letter on this forum because it makes me think of my bladder control *roblem, and it offends me.
 

anonymous

New member
Because it's said in a tone that is sarcastic, did not mean to offend you, more worried about how others may take a comment like that.

I also work with abused/neglected, medically fragile, and special needs kids on a daily basis. Have been for 12 years. So maybe I take offensive to something said more easily in regards to kids that deal with these issues.

Maybe one of the reasons why I tend to try to enjoy the life that I have with my son, regardless of CF. I see so many others that have so many other struggles. Gives me a reason to love him even more. That is a gift(my son) and I treasure each moment of him.

Mom to 3 1/2 yr old w/cf
 

anonymous

New member
Steve,

Thanks for posting your opinion, why should your thread be locked for doing so? I just don't understand how some people on this site seem to think that only their opinion matters. It is getting really old here, fact of the matter is that we are all here for one reason and that is to support each other, if we can't voice our personal opinions and we are afraid to respond or offer our advice because we get slammed by a select few what the he$$ are we doing here? I just don't get this..... why so much ridicule and hatred for people who are in their same shoes. When I first joined here it wasn't like this, now it is like there is division on this board, it is really sad!!!
 

Faust

New member
NP, don't worry about me, i'm an evil man.


But I do think the Downs kids would learn hockey before someone on here would see the hypocrisy in their latest opinion. Matter of fact, I think I would have several 50+ goal scorers before then.
 

TCNJcystic

New member
Thank you so much for supporting me. I truly cannot believe a thread dedicated to motivating those who may have been looking for it turned into pooping in people's gas tanks. I am, however, happy to see the positive responses this has received, and these were what I intended to bring out from the crowd. The topic's subtitle was created in an unfortunately true prediction of how some would react.

Perhaps PM Bill and ask him where one can go for true motivational support as I did.
 

Allie

New member
I apologize for suggesting the thread should be locked, it was my suggestion.

But it wasn't because of Steve, it was because of what I knew would ahppen, what's happeneing now. The fighitng. Stevee, my asking for the thread to be locked have nothing to do with you, or even what you said, I'm sory it seemed that way.


I just hate what's going on now...this.
 

Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TCNJcystic</b></i>

Thank you so much for supporting me. I truly cannot believe a thread dedicated to motivating those who may have been looking for it turned into pooping in people's gas tanks. I am, however, happy to see the positive responses this has received, and these were what I intended to bring out from the crowd. The topic's subtitle was created in an unfortunately true prediction of how some would react.



Perhaps PM Bill and ask him where one can go for true motivational support as I did.</end quote></div>


Stevie I have no problem with you, and would never poop in your gas tank. Anyways, you guys have fun. I'm off.
 

anonymous

New member
Because it's said in a tone that is sarcastic, did not mean to offend you, more worried about how others may take a comment like that.
-------------------------------------------

Totally right, seeings I have a child with mental retardation it is really offending! I would not trade my child for anything, that is really rude what Sean stated..................
 

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TCNJcystic</b></i>
"To people living with, living with, living with...not dying from disease."</end quote></div>

Hmm that's funny... because you know... CFers never die.

And as a general statement, agreeing with others, we're all going to think different ways. I think everyone is entitled to their opinions and can say whatever screwed up junk they want. But WHY WHY WHY is everyone so adament on TELLING OTHER PEOPLE WHAT TO DO / SAY / THINK???

<u>IT'S NOT YOUR JOB!!!!!!!!!</u>

If I want to dwell on death and cry every day, whine to everyone, and hate my life, I'm very much entitled to do so. (Mind you, I don't, but if I did, I'd have the right).

Kay done.
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>

Where has he told anyone what rights are to be expressed and what rights aren't? Where is he telling anyone how to feel or speak? He's just sharing HIS opinion of what's going on, what's been said/written.



I think the only fighting that is going to happen on this board is when people start telling him he has no right to express his feelings. I don't know if you see it Allie but you are telling HIM to do or not to do exactly what you say you have a problem with-telling others how to feel and behave.



I don't see the harm in letting this continue into a healthy discussion and see where it goes. I (PERSONALLY) don't think there is any need to lock a thread because you don't agree with what is being discussed. There is a report to moderator button for offensive comments, profanity, grossly inappropriate discussions and whatever else Bill has designed it for (Bill, maybe you can specify for us since we all have a different opinion as to why/when it's appropriate to use) but I don't believe the purpose of it is because you don't like the topic.</end quote></div>



I second the choice for word of the day. Hypocrite. Now back to Bert and Ernie.
 

Debi

New member
Thank you, Steve, for sharing about the other side of CF. Personally, I have times when I need to wallow in the early death aspect of CF. But mostly I relish the time I have here on earth and want to celebrate it. Both reactions are normal and both need to be expressed. No need for arguments.
 

Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Because it's said in a tone that is sarcastic, did not mean to offend you, more worried about how others may take a comment like that.

-------------------------------------------



Totally right, seeings I have a child with mental retardation it is really offending! I would not trade my child for anything, that is really rude what Sean stated..................</end quote></div>




I personally feel that if a downs syndrome patient wants to learn to play hockey, he has every right. I'm sorry if you don't agree.
 

Emily65Roses

New member
Hmm. I reread. Seems Steve never told us what to do. So scratch that I said that. Opinions are fine, no matter how much I disagree. What I disagree with is people telling others what to do, like Julie's beautiful display last week. Being as that's not really what Steve did here, I have no problems.

I do adamently vehemently disagree with the attitude in the post, but same as Sean's first reply... I'm sure you all know how I feel.
 

anonymous

New member
When I replied to SD comment on Down Syndrome children it was not meant to start a fight, truly was not, just wanted to comment on something that did not need to be stated, as it was not related to the topic.

I totally agree with living and enjoying the life one was given. Whether it be the ideal one or not, it is still something to treasure. If life was not full of challenges what would one learn???? I've lost some of my dreams, with the diagnosis of my son, however, those dreams have only changed, they've become bigger ones. I want my son to live for each day and still work towards the goals that others do. Graduation, kids, job, grandchildren. I want to be a part of him acheiving those goals. I will be honest with him when the time comes about his disease. However, will never allow him to use it against himself.

Life is difficult and the challenge is there to take. I will give him every opportunity to win his challenge and help him achieve it. Those are my dreams, truly have not changed much, other than adding in lots of medicine, therapies, hospital stays, etc. However, these can also turn into a reason to make the fight a good one!!!

Mom to 3 1/2 yr old w/cf
 

Emily65Roses

New member
Arg something else.

Thinking about death now and then does NOT equal, contrary to popular belief, not enjoying one's life. Mike and I discuss it from time and time, and we still are very happy, in love, and such, etc.
 

Faust

New member
I'd say your kid has the possibility to live quite a while. Of course that is dependent on many things, but kids born today with CF, even with bad mutations, have a much better chance of living a longer and more quality life than say me born in 1971.
 

anonymous

New member
Yes, exaclty Steve never told people what to do, he was only stating his feelings. People on here are to eager to jump someone for posting their feelings, like no one elses matters except their own.

Hey, go Downs Syndrome child-- make a goal!
 

anonymous

New member
Can I just ask that we cut out the down syndrome/abused children/etc. business once and for all? Not only was the sarcasm with which it was first mentioned instigative, the whole tangent was completely unnecessary in the first place. If you want to discuss teaching individuals with down syndrome hockey, or whatever it is you incessantly keep trying to push, kindly do it elsewhere as it simply does not pertain to the original discussion. Plain and simple, this is just not the place for it.
 

TCNJcystic

New member
I've just chatted with Allie and wanted to post that I find her to be quite friendly and understanding. I support her opinions 100%. She's a cool kid.
 
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