I Have No Idea What to Call This Thread

julie

New member
Em,

Your post makes me so sad. I know that Mark has told me the same thing on a few occasions but I love him for who he is, what he has been through, what he goes through every day and so much more. I know the same goes for your friends and family and Mike. We each have our own "curse" so to speak. There isn't a day that goes by that I am not forever grateful that Mark came into my life, because he SAVED my life!! I don't ever think of anything that happens, related to his CF or not, as a burden. Everyone comes into relationships with baggage, and as people get older they accumulate more baggage, so don't ever feel like you are the only one who ever feels like a burden on someone. I hope that makes sense, I can think what I am trying to say but then when I type it, it comes out all wrong. My husband is a blessing in my life, he's the reason why I get out of bed everyday, why I go to work, why I CARE about anything.

I am so sad that you feel that way, I don't really know what else to say right now.....
 

anonymous

New member
hey Emily i have CF but if i was pregnant and found the foetus had cf, i would abort. this is a personal choice, there is no right or wrong. what i find really interesting is i would abort for the same reason you wouldnt! you mentioned that you found ppl aborting selfish, i personally see deliberately bringing a child with cf into the world as selfish. as i say, its just a personal opinion, probably based around spending a great deal of time on the childrens ward watching pwcf suffer. i love my life, am one of the most optimistic people (i promise!) so its not because i think life is not worthwhile if you have cf, mine certainly is! its just from my personal perspective, you can prevent suffering before the foetus is a child (of course this also shows my view stems slightly from my beliefs on when life begins).
its true you can live a brilliant life with cf, however it can also cause phenomenal suffering. many live into adulthood, have few complications etc, but many still die very young and if i then had to watch my child become very ill very quick, i would feel as though i knew that in advance and still chose to carry full term, therefore had knowingly caused suffering. please no one be offended, as i by no means judge anyone who choses to have a child already knowing they have cf, i am fully aware that this is only an opinion, not the morally right answer. i guess its as logical as Emily feeling a burden really, there's absolutely no reason for it caused by others, just a feeling u have deep down. best of luck to everyone whatever path they choose, and the most important thing in life is to find what is right for you, and then make your peace with it and make that path the most positive and successful option you possibly can.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I am a mother of a CF child. Recently found out her diagnosis and thought we had a "normal" child all along, wait I stil have a normal child. She just happens to have CF. But, with all of the negatives (and I'm just started to learn about them) there are some positives that come along with it. A friend e-mailed me this story and I thought I would share it with you guys. I know it doesn't exactly fit with CF, but its a good story.

_____________________________________________________________________________________________________________
A very touching story that gives you hope.

At a fundraising dinner for a school that serves learning disabled children, the father of one of the students delivered a speech
that would never be forgotten by all who attended.
After extolling the school and its dedicated staff, he offered a question. "When not interfered with by outside influences, everything
nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.
The father continued. "I believe, that when a child like Shay comes into the world, an opportunity to realize true human nature presents
itself, and it comes, in the way other people treat that child." Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball.
Shay asked, "Do you think they'll let me play?"
Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his
son were allowed to play, it would give him a much-needed sense of belonging. Shay's father approached one of the boys on the field and asked if Shay could play.
The boy looked around for guidance and, getting none, he took matters into his own hands and said, "We're losing by six runs and the
game is in the eighth inning.. I guess he can be on our team and we'll try to put him in to bat in the ninth inning."
In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the outfield.
Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands.
In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat. At this juncture, would they let Shay bat and give away their chance to win the game?
Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible 'cause Shay didn't even know how to hold the bat
properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher moved in a few steps to lob the ball in softly so Shay could at least be able to
make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay.
As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher took the ball and turned and threw the ball on a high arc to right field, far beyond the reach of the first baseman.
Everyone started yelling, "Shay, run to first! Run to first!"
Never in his life had Shay ever made it to first base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!"
By the time Shay rounded first base, the right fielder had the ball.
He could have thrown the ball to the second-baseman for the tag,
but he understood the pitcher's intentions and intentionally threw the ball high and far over the third-baseman's head.
Shay ran toward second base as the runners ahead of him
deliriously circled the bases toward home. Shay reached second base, the opposing shortstop ran to him,
turned him in the direction of third base, and shouted, "Run to third!"
As Shay rounded third, the boys from both teams were screaming, "Shay, run home!"
Shay ran to home, stepped on the plate, and was cheered as the hero who hit the "grand slam" and won the game for his team.
"That day," said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and
humanity into this world."
_____________________________________________________________________________________________________________


Don't feel like a burden if you require special attention. It just gives others around you a chance to shine!
I would not give my daughter up for anything thing in this world!
 

anonymous

New member
I personally do not agree with abortion. If you know there is a chance for your child to have CF and you would choose abortion if the child did have CF...Don't get pregnant! Adopt! Now if you are willing to take the chance and would love and care for the child no matter if they did, or did not have CF go ahead a get pregnant. Besides, CF is not the only thing that can bring heartache and suffering to a child. The point is, if you want to have a child be ready and willing to love that child no matter their medical condition. If you can't handle anything but a perfect child it would be best not to have children at all.
 

WinAce

New member
Don't set up false dichotomies between "you carry a child with CF to term" and "you don't love your child." I'm pretty sure almost any parent can "handle" a sick child, and love them despite anything. This doesn't mean they should have them, just to see what it's like and please your pro-birth sensitivities.
 

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>WinAce</b></i><br>Don't set up false dichotomies between "you carry a child with CF to term" and "you don't love your child." I'm pretty sure almost any parent can "handle" a sick child, and love them despite anything. This doesn't mean they should have them, just to see what it's like and please your pro-birth sensitivities.<hr></blockquote>

Not doing that. Even without CF there are no gaurantees that a child will have a painfree, healthy life. My point is that if you don't want to see a child suffer it is best not to have children. You could give birth to the "perfect child" and that child could suffer severe trauma that could be worse than having CF. I do agree that you shouldn't have them "just to see what its like". You shouldn't have a "normal" child to see what its like!
 

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br> I also feel like... (and christ, don't crucify me here!) people are being selfish by aborting their CF kids. They don't want to deal with the burden and the pain caused by a sick child. But they don't have the first clue of the pain involved with living with CF. Who are they to decide loving with someone with CF is just too painful to have that person around? They aren't getting the short end of the stick in that case... we are! <hr></blockquote>


That is retarded. Anyone aborting because of the problems their child would have obviously has a lot more to do with how it would affect the child's life than their own. Yes, the mother/father not wanting to deal with the "burden and pain caused by a sick child", the financial strain, and all of the horrible involved, but come on-- clearly their top concern would be because they DO have the first clue of the pain involved with living with cystic fibrosis-- and they would not want to inflict that on somebody.

rotandroll
 

Emily65Roses

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br><blockquote>Quote
<hr><i>Originally posted by: <b>Emily65Roses</b></i>
I also feel like... (and christ, don't crucify me here!) people are being selfish by aborting their CF kids. They don't want to deal with the burden and the pain caused by a sick child. But they don't have the first clue of the pain involved with living with CF. Who are they to decide loving with someone with CF is just too painful to have that person around? They aren't getting the short end of the stick in that case... we are! <hr></blockquote>

That is retarded. Anyone aborting because of the problems their child would have obviously has a lot more to do with how it would affect the child's life than their own. Yes, the mother/father not wanting to deal with the "burden and pain caused by a sick child", the financial strain, and all of the horrible involved, but come on-- clearly their top concern would be because they DO have the first clue of the pain involved with living with cystic fibrosis-- and they would not want to inflict that on somebody.
rotandroll<hr></blockquote>

That's why right after that little paragraph, I wrote: "Then at the same time, a lot of the time when I talk with my Mike about this, I tell him it must often be harder to be him than it is to be me. Physical pain and limitations make me want to go out and shoot people sometimes. Really pisses me off. Meanwhile, though, I've told Mike time and time again that I'd rather be me in this situation than him. If I had to choose between myself having CF, or him having CF, it wouldn't take more than a split second for me to say "okay, me." I have a much easier time dealing with pain myself than watching him in pain. And anyone who loves anyone knows that feeling."
 

WinAce

New member
<blockquote>Quote
<hr>My point is that if you don't want to see a child suffer it is best not to have children.<hr></blockquote>

Alternatively, you could at least try to give them the best possible chance of not suffering. That includes not handicapping them from the get-go with a genetic illness.

<blockquote>Quote
<hr>You could give birth to the "perfect child" and that child could suffer severe trauma that could be worse than having CF.<hr></blockquote>

And? If you beat someone up, sending them to the ER, it's not going to be a defense at your trial that you potentially saved them from an even worse beating that night. Let us not forget that it's not "CF vs. everything else," with the guarantee that your kid is otherwise home-free, but CF and/or everything else (as someone aptly pointed out on another thread). Should that severe trauma affect someone who already has CF, the parent is gonna feel doubly guilty, after all...
 

anonymous

New member
Dear Emily,

It breaks my heart to read your feelings. I am a mother of a 14 yr. old daughter with CF. I wouldn't give her up for the world. She is my sunshine and has been such a blessing to my husband, myself and her two older sisters.

It's weird but my daughter and I just had a discussion about if she will want to have children or not. She shared with me that she did not want to bring a child into this world if there was a chance that they would have CF. She said her future husband would just have to understand that if he was a carrier they would not have children. She also shared with me that that is all she has ever wanted to be is a mom. And I shared with her all the joy she has brought to our family and how very special she is to me.

It's hard as a parent of a child with CF to know that you are the one who gave this to your child. It hurts to know that you have caused your child pain. At the same time even though I know that I have caused her pain I would never have chosen not to have her. I love my daughter for who she is not for what she has.

I hope my daughter will be able to continue to share her thoughts with me and I will be able to help through the tough times ahead. I thank you for sharing your thoughts with us.
 

WinAce

New member
It's very hard to consider counterfactuals (situations that didn't happen) when we're emotionally invested in what <i>did</i> happen. But, I believe, if we try to divorce our reasoning from our emotion, it can be done, and can lead to some startling conclusions.

If you have CF, it's true that, had you never existed, all the joy and good times you experienced would not have happened. But what other good things <i>would have</i> happened? Would you be a different person, without CF, who would shine as much in the world? Would your hypothetical, alternate-universe self be as happy as you are (or more so, without needing to consider IVs, potential early deaths and the like)?

If the Ice Age hadn't made our world largely uninhabitable... if the Aztecs hadn't been slaughtered by the Spanish... if the medieval Plague epidemics hadn't killed millions... All events without which, most likely, none of us would be here today. (They affected so much of history that, per Chaos Theory, every single person alive today wouldn't exist, in lieu of another person who was born under vastly different circumstances.) But before the crop of people alive today was born, did those events deserve to happen more--with the subsequent people they helped create--than the Warming Periods, invasion fleet-wrecking storms, and other diseases that would have given rise to an altogether different world?

I find it hard to contemplate not having Jessica... but, imagine I was born without this illness. Would we find different "soul mates"? Get jobs and work on our careers, perhaps helping those with some horrible illness by developing a new drug, or creating a much-needed charitable organization? Run into each other anyway, fall in love and be considering our first house right now, instead of wondering how to pay the same amount of money for a transplant?

I would not give her up, even if it meant I could never face the ravages of CF again. But, the rational part of me simply MUST acknowledge that this is the "me" of this timeline, universe--call it what you will--who'd make that decision. Until our romance blossomed, it was only a hypothetical, like trillions of other potential romances that will never see the light of day for the most pithy reasons (a cold that kept someone in bed, instead of bumping into a potential mate; a sliding door that prevented a young woman from breaking up with her philandering boyfriend, and meeting the true love of her life...).
 

Lilith

New member
*lol* WinAce, I must admit that though all of your so-called 'negativity', you have a very romantic way of looking at life ^_^ I'm happy for you in that respect. But you also make a good point. Without CF, I doubt I would be the person I am today. There are just some things about this disease that have shaped the way I turned out that, quite honestly, I wouldn't trade for anything. And despite all the horrible effects, there are a few good things to CF. Like being able to eat all the Reeses Pieces I want and not get fat...yum!!
 

anonymous

New member
Just be sure to tell your future children not to mess with your present romance should they swing by in an ugly Irish sports car. Otherwise their photographs might begin to fade.

Q
 

Emily65Roses

New member
Yeah I have to concur, Lilith. For such a "negative nancy," WinAce sure is quite the romantic. <img src="i/expressions/heart.gif" border="0">
<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

EmilysMom

New member
I have to believe that some of these thoughts go back to the conversation we had the other night about the insurance crap. AND NOW I have to say that I feel the same way as Maria. You have to understand that Daddy and I feel like we have burdened you with this disease, not the other way around. You didn't ask to come into this world with this messy stupid disease. We brought you here and gave you this lovely thing. We wouldn't trade you for the world, but you already know that!
Never feel like you are the burden...remember that we gave this to you.....you're welcome! ;o)
 
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