do you have another baby????

anonymous

New member
Dave,
No one is immune to illness/challenges while on earth. Everyone eventually gets sick and dies. According to human perspective no one has a "perfect" plan to live forever and without any challenges. From what I learned through reading God's word is his perfect plan is for me to accept his will for my life and to live with him in Heaven. There are many circumstances that are hard for us to understand. Perhaps we may never why things happen to us here while we are on earth, but I believe God has a plan for everything.
Sharon
 

Emily65Roses

New member
Dave did not *clearly* attach any guilt. At least not in my opinion. He merely brought forth a question that a lot of people don't like to look at. It's certainly not as if any parents would purposely give their child CF, but getting pregnant again knowing you're both carriers does make you more aware than many CF parents. Having that knowledge gives you more decision-making power. As I said, I saw no guilt. I only saw him make sure the people reading this post had at least once, thought of that. Now, as I said, I see no guilt in parents of CFers. I have never once blamed my parents for my CF. But I also don't doubt that at least sometimes, parents blame themselves. He was posting the question to make sure the parents were ready for the blame they may very well place on themselves.

And I suppose this part goes mostly to Sharon (also Maria, I guess). You're right in that no one is immune to ill health in this world. However, CF is one of the less common and generally more sucky things out there. Of course, there's always worse. I know that. But given that many people with other diseases still live to old age, just with some complications, while CFers average is still only in the 30s, does make a difference. Not only that, but as well all know, it's not just *boom* we hit 32 and drop dead. Each year we live, it gets worse and worse until we, usually slowly and painfully, die. CF is never wholly who we are, but whether or not you want to admit it, it is a BIG part. And no matter who we are, if we have it, you do have to live with it, which requires a lot more tolerance for life in general than most healthy people seem to have. I suppose I don't need to say any of this. We all know. I'm just making a point. Regarding what Dea said, after I passed through my terrible teenage years where life was nothing but a bottomless pit, I began to agree. CF or not, I'm glad I'm alive, and so even if you choose to have children that you know have the chance to have CF, you're not necessarily doing a bad thing. In fact, I wouldn't say it's a bad thing at all.

But back to Sharon, I have to bring up a rhetorical (yes thoroughly rhetorical, I don't intend to make any argument out of this, it's just something to ponder) idea. I understand family members and loved ones deal with CF to a great degree. In fact, every time the idea is brought up, I have said I'd rather it be me than anyone I love. I imagine it must be hard to be there and feel helpless. You may also believe that your children having CF is part of your god's perfect plan. However, your child may not think so. They're still young, so who knows. But just because you feel that way does not mean your children will. I think that was part of what Dave was saying. Like I said, I like being alive. CF or not, I'm glad I'm around. But no way in hell do I see my being sick as part of anyone's plan for me. Certainly in no way is it a "perfect" plan. Perfection by definition doesn't fit in that situation at all. Now, in my opinion, perfection sucks anyway. It's entirely too boring, and if everyone / everything was perfect, life would be entirely dull. I'm just trying to point out some of what may have been Dave's thinking. I don't see pointed blame. I saw a question asked just so that the parents could think it over before making that decision. Also, whether or not anyone thinks it's in any god's perfect plan for anyone to have CF, that doesn't mean everyone thinks that way... even your own children. I was raised going to church every Sunday, believing in the "popular" god that the general public refers to. When I reached an age where I could think for myself and form my own opinions, I decided I didn't believe in any of it.

I really think that was most of what Dave was saying... Now to Dave : If I spoke incorrectly or out of turn here at all, please tell me so. I hate when people misinterpret things I say to try and bring up another point of view, or be helpful... as nasty, unfair, and rude. I just wanted to speak up and voice what I saw in it, because I saw nothing that seemed mean. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Emily- You bring up some good points. However, I still believe a more objective way for Dave to express his opinion would be to state:

"I don't believe that two known carriers of CF should have a second child for the following reasons etc, . . ."

When he said, "Will you be able to live with yourself ..." I believe that implies that there should be some guilt attached to those who make the decision to have another child.

Just my thoughts,


Maria (mother of three daughters, the youngest Samantha w/cf)
 

anonymous

New member
Maria and Sharon,
Obviously Dave harbors a lot of resentment and anger towards his parents because of his CF and feels the need to express it to people on this site. He is fully entitled to be resentful, I can't say that if I was born with CF I wouldn't feel the same way. There are others on this site that say they don't and never would hold it against their parents. To each his own. What I have learned from being on this site is that you can't take everything to heart. Sometimes we need to hear the negative things because they are true, but sometiems it isn't appropriate. You know the history with you and Dave so as hard as it might be, ignore it. It his his issue, not yours.

Dave, this is in no way meant to attack you, I understand BOTH where you are coming from and where Sharon and Maria are coming, but I think you should also keep in mind that everyone sees their CF different and this world is full of people who have various opinions. You are entitled to express your opinions it is your right, just remember that someone else is also entitled to request that you DON'T give your opinion directly to them-that is their right. Given the history of you expressing your opinion to Sharon, she just wanted to "put it out there" that she did not want a personal response from you to her. I see nothing wrong with that-she was just trying to prevent you saying something that you have stated before-and obviously hurt her.

I really hope this didn't offend anyone, I can understand where both sides are coming from and think that you two just need to say awa from eachother and not post anything directed towards eachother.


Julie
 

anonymous

New member
Julie

Obviously you are ignorant, you don't know me and don't know anything about my life and to say that I have resentment towards my parents is ignorant. I HAVE NEVER BLAMED OR HELD ANY RESENTMENT TOWARDS MY PARENTS, YOU SHOULD BE ASHAMED OF YOURSELF FOR EVEN SUGGESTING THAT.


Emily

The first paragrapgh you wrote about me was not out of turn, actually your analysis of the question that I posed was bang on.

Dave 29 w/cf

Starting tomorrow I will be Dave 30 w/cf
 

anonymous

New member
I am the mum of a beautiful 4 week old baby girl who was born (rather traumatically) with meconium ileus due to cf & went straight to theatre for surgery.She then spent 2 and a half weeks on neonatal ITU and we were discharged home the week before Christmas.She has made a fantastic recovery & for that I am eternally grateful.However the future terrifies me & one of my earliest thoughts was about the implications for having more children.I have thought alot about this in the last 4 weeks & I don't think I could bear to take any chances-I could not risk putting any of us through the last 4 weeks again-the look of terror in my husband's eyes still haunts me.I think if we were to go down the CVS route we would need to have a plan first-we discussed this with Downs sydnrome before our little girl was born.Hoever I don't know whether I could go through with a termination if the test was positive.Since I really don't want to risk having another child with cf that only leaves embryo selection through IVF-not a process I relish but one I would be prepared to try.
These are just my thoughts-my husband won't discuss it at the moment & maybe he is right-he is talking about a vasectomy.From a selfish point of view,because my husband is 14 years older than me,there is a strong possibility that I will outlive both him & my daughter leaving me to grow old alone if we have no more children.Of course I may walk under a bus tomorrow!As I said these are just the ramblings of my hormone-riddled mind but they might help.
 

anonymous

New member
Emily,

I am glad that you also stuck up for Dave. That is what I was also trying to do. He has a right to
state the less popular side of things.
 

NoDayButToday

New member
Happy Birthday Dave!

I think my opinion on this has been made clear (that the decision is such a personal one that in the end your own feelings on the topic are all that matters) in the several other threads started about this. I have to say though:
<blockquote>Quote<br><hr>No one is immune to illness/challenges while on earth. Everyone eventually gets sick and dies<hr></blockquote>
Yes that's true, but when you have CF it is a little different. Someone said a few months ago on here "Yes, anyone can get hit by a train, but when you have CF it's sort of like being strapped to the tracks watching the train come slowly at you."
Which isn't to say I live my life thinking about CF being an illness that will probably shorten my life, I love my life, would never wish I wasn't born because of CF. Yes no one is 'immune' to health problems, but not everyone is born with a HUGE one either.

Happy New Year everyone! Health and happiness in 2005 <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Dave everything you have ever said on this site (or almost everything) leaves most people to believe that you hate your life and you are looking to blame someone for your CF. If that is not the intention that you have and that is not the way you feel, then you might want to re-examine your attitude. It is true and you are right, I don't know you, but everytime I read something you have posted on this site you are depressing, negative and sometimes downright rude-to the very people who need SUPPORT not PERSONAL ATTACKS. That is NOT what people come here for. There is a way to get your point across and tell the truth without constantaly offending people.

And you might believe me to be ignorant, but in my last post I just gave you a taste of your own medicine-doesn't make you too happy does it? If you CAN'T take it, then don't dish it out to others.

Julie
 

anonymous

New member
"Each year we live, it gets worse and worse until we, usually slowly and painfully, die. CF is never wholly who we are, but whether or not you want to admit it, it is a BIG part. And no matter who we are, if we have it, you do have to live with it, which requires a lot more tolerance for life in general than most healthy people seem to have."

Emily, I could not agree with you more. Like I have said in previous posts I could not ever knowingly take the one in four chance and bring another child into this world with CF. I am not that selfish. Yes, I think it is selfish. As far as this God's plan discussion I also don't believe in a god that would allow my little guy to suffer (like he will - let's face the facts of this dx.). The fact that the science and technology is there to PREVENT this in most cases I can't believe someone would take this chance.. I just can't... and screw my doctors and my husbands family for not testing us and not telling us there were other carriers with CF in his family ... SHAME ON THEM. They know who they are.
 

anonymous

New member
I completely agree with Julie. When I first started looking at this site, there wasn't the hostile, negative comments that many of you have now. In fact, most people that use to be regulars on this site don't even post anymore....mmmmm, maybe because they are SICK of the negative attitudes! Like Julie said, there is a way to make your point without being so harsh and rude.

And those that say that they are just giving others something to think about before they make a decision.....duh!!!! I think EVERYONE that makes the decision knows what they are up against and knows the odds. Just my thoughts. I hope that 2005 will welcome some new comers with better attitudes.

HAPPY HEW YEAR EVERYONE!!!
 

anonymous

New member
When you have adversity/challenges in your life, you have two choices. Take what's given to you & make the best of it, or have a bitter, unhappy attitude/life and let that negitivity effect your whole being.
I choose the high road. I can't change my CF, so I try to make the best of it & enjoy the short life that I have.
Anytime I even start the "woe is me" syndrome, I remind myself that I have it better than a lot of others & am thankful for what I have. I do have those times that I feel a little down, we all do, but I try to quickly pick myself up & keep positive and appreciate what I have.
Just my 2 cents worth<img src="i/expressions/face-icon-small-wink.gif" border="0"> Happy New Year!
 

Emily65Roses

New member
Uhm.. I have to say... Julie, I realize you said "leads most of us to believe" about Dave, so that doesn't mean all. I just wanted to speak up that I'm one of the non-most. I don't have the slightest problem with Dave, and don't necessarily see reason to. No one can be liked by everyone, and I know that. Some people will have problems with people that I like just fine, and vice versa. I just felt like voicing that I am one of the "apparent few" who like Dave.

Also, I have to say... It seems like anytime anyone says anything even slightly unpleasant, you jump to conclusions that they are bitter and rude people. Now, this has nothing to do with Dave, because I still don't see what he said as rude. But even if someone says something rude once or twice, that doesn't make them bitter hateful people. Everyone is rude sometimes (and I'd be hard pressed to find a single person who has never in their life been rude). Dave seems to be doing, in my opinion, what someone else said. "Stating the less popular side of things." No one seems to like to hear the less popular things (this makes sense of course, because if people liked hearing them, they would, instead, be popular), so when someone speaks up, it's generally not well-received. My only suggestion to you would be not to take everything so personally and literally. I have moments where I'm bitter, angry, and depressed, but that's not to say that's how I am all the time. In fact, I'm usually just fine. So even *if* you think what Dave said was rude, he's entitled to his moments. We all have them (and again, I'd be hard pressed to find a single person who has never in their life been bitter, angry, or depressed -- in this case I'm referring to CFers particularly because I'm talking about bitterness, anger, and depression regarding the CF itself). I know you think he's this way all the time (as you said so), but I tend to disagree. It doesn't matter either way, as only Dave knows how Dave really feels. The one thing I wanted to try to get across... is you needn't be so quick to tell people they're being bitter and rude. I think you may too often be jumping the gun. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Can we PLEASE STOP this rediculous nonsense and just share good ideas and opinions on this site? I love you all, CF patients and CF parents, let's just try to have a happy new year! I truly believe that a cure is in the near future so that we don't have to gripe about this BS anymore!

HAPPY NEW YEAR EVERONE!!!!!!!!!!!!!!<img src="i/expressions/beer.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/light.gif" border="0"><img src="i/expressions/lips.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/wine.gif" border="0">
 

anonymous

New member
Emily, you speak truthfully and get your point across very well and rarely do I ever see your post as being rude to someone else. Of course we all have our moments, myself included and people call me on it. My whole point about what dave says is that more often than not, he seems to personally attack people. And just as he, you and I are entitled to tour opinions and requests, so is everyone else. I see no harm in sharon RESPECTFULLY asking him not to post his comments DIRECTLY to her again as she had already heard is opinion earlier this year. From what I read, I don't see that she was asking him NOT TO POST ANYTHING, she just didn't want it directed at her. I welcome his generalized comments, or even direct ones as long as they aren't attacking people-because he does have good points to get across-but the attacking ones are sometimes too much. That is all I was trying to say.

I feel for everyone with CF, but can I wholly understand it? NO, NEVER! All my thoughts and prayers and even a part of the measly $16,000 that my husband and I scrape by on every year gets donated to the CF foundation and the CF scholarship program-because that is really ALL I can do to help. As well as make sure my husband gets the best CF care, fight for his rights until I am exhausted (appeal after appeal to the insurance company), take care of him when he is sick and be avilable on this site to others with CF whom I might be able to help by answering their questions. Those of you with CF have your personal feelings about the disease and daily life, and those of us who take care of you, actually let me speak for myslef, I FEEL HELPLESS about the whole thing. But do I give up, never, do I hate life, never, do I get frustrated-God yes, do I get sad,angry, hateful-sometimes, but is it worth it in the end-To me-YES! So please don't talk to me about not understanding, because those of us who care for CFers struggle in a completely different way.

Julie
 

Emily65Roses

New member
Was the second paragraph to me? I don't recall saying you didn't understand. If I did... Do me a favor, and point it out? <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Emily, the second paragraph wasn't directed to you at all-I just wrote it for those that made other comments both before and after you. You never said I didn't understand, I am sorry if I made that second paragraph sound like that.

Julie
 
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