I Have No Idea What to Call This Thread

[Emily65Roses]

Hmm. I'm not even sure what I want to say here. But the abortion threads make me want to say something. Before I start, I'm going to make a few disclaimers here (it's really sad that I should have to do that, but here goes). None of this is meant to offend anyone. I also don't condemn anyone for aborting a CF baby. If that's your choice, do it. I'm pro-choice, and not against abortion. But as a CFer, it does make me feel some things, and that's what I've started this thread for. I want to discuss these things that I feel. Discussing them with other CFers is my best bet, because no one else will understand what I'm talking about. Either way, some people may find some parts offensive. You've all been warned.



I don't have any family members with CF. I see my friends going through the same stuff that I go through, and it's not fun. I have NO idea whatsoever what it's like to be a mother. Furthermore, I have no idea what it's like to be told your child is sick. But as a CFer, I feel... offended, maybe? That's not really even the right word, I just can't think of a better one.

I feel a lot of things. I feel like I'm a burden. I feel like maybe people in my life would've been better off without me? Or that maybe I'm meant to feel that way? I kind of feel as if this subject makes me feel like we're all supposed to feel worthless. Like we all should've been gotten rid of before we were born, and the fact that we're still here is a problem. Like the world would be better off without us? A lot of us are burdens to insurance companies, and the government (via SS). If we were to ask people who don't know any CFers, I guarantee you'd get a lot of people saying the world would be better off without people like us, disabled people, etc. We just take up space and cost money and then we die and blah blah. Other such similar garbage. This issue makes me feel like we're supposed to feel like those people are right?

I don't know, it's all very weird. This is tough for me, because usually I'm much more articulate in voicing what the hell it is I'm thinking. And right now I know I'm hardly making any sense at all. I just feel... funny about all this and wanted to say *something* even if it didn't quite make sense.

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!

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.

So I feel both ways (that we have it harder, and that they have it harder), which doesn't make the slightest bit of sense. And I know that. Even thinking we both have it hard, I wouldn't say it's even. It's two entirely different kinds of pain. But both sides suck and I know that. It's just that, whether it makes sense or not, people aborting their CF children somehow (even if I can't pinpoint why) makes me feel like we're all worthless. Like we all should've been gotten rid of. Even though I know better.

Wow, okay, none of this makes sense. So thanks for letting me ramble like a deranged lunatic for a few. Feel free to comment on anything here. I just had to talk. Thanks again guys. <img src="i/expressions/rose.gif" border="0">

(PS-- why the hell does copying all this from Word make all the apostrophes, quotes, and elipses effing question marks?!?!?!)

 

[WinAce]

It's one thing to kill a person who was unfortunate enough to have CF. It's quite another to prevent more of them from being made. In the same vein, it would be evil to kill those already afflicted with Polio. But making sure it never crippled anyone again, was indisputably right.

If a couple whose kid has a strong chance of genetic illness go an alternate route, and say, adopt someone else's kid, they didn't kill a child with CF. They just prevented a potential child with CF from being born. Just as a carrier in a marriage with a non-carrier (whose kids are at no risk for CF) is choosing to have a normal kid, and "denying life" to a CF child that could potentially be born, if they had one with another carrier.

If you believe an embryo isn't automatically a person, at least until it acquires some semblance of consciousness or the capacity for it, then it's difficult not to agree.

 

[Emily65Roses]

I do agree with that. If I thought an embryo was automatically a person, I think I'd be against abortion. It just somehow (whether it's reasonable or not) makes me feel like the fact that I'm here is just a big pain in the butt to many people around me, and whoever pays for anything for me (including insurance, SS, etc). Like if my parents had known and aborted me, the world would be a better place. Some nonsense like that. I know it's stupid. But there you are. Haha.

 

[ClashPunk82]

Emily I totally get what you are saying. I definitely feel bad for being here and sometimes wish I wasn't but then again I don't agree with someone aborting a baby because they have CF. I feel like a burden too and feel like I make everything harder on my parents and my boyfreind. I feel as though he can do so much better and I just feel like a drain on everyone. I try not to feel that way but it's just something that I have in the back of my mind that never goes away.

 

[anonymous]

I agree with you Emily. I dont know what to call the feeling either. I see both sides, but I am living the one with cf. I would choose myself to be the one with cf over and over again if i had a choice. I can not see anyone I love suffer. I know its hard on them to see me sick. So I see both sides of it. But I also agree with WinAce in that if you can prevent it then do so. If a couple is knowingly carriers, then try to prevent your children from having cf, whether its adopting or geneticly altering dna with all that technical mumbo jumbo. I mean its different to prevent it by killing, if like Win said you believe a fetus is a person. Its a very sensitive subject very much so. I dunno. I just want to say to the parents, no matter how hard you try at some point your children will feel like burdens. Its just what happens. People with cf do not like to see all the struggles families go through just to help them with medications, hospitals just over all well being. We dont like to see people going out of their way, hurting for us. I do have to say though that all the good times seem all that much sweeter. Or to me they do anyway.
Amanda

 

[anonymous]

Emily,
(My disclaimer): I don't have cf nor am I the parent of a cfer (although I am a parent). I AM just the friend of someone who was severely affected by cf (lost a wife to the disease.) I also am pro-life although since abortion is legal, I do respect the women's right to choose (although I may not, hey, probably will not agree with the decision, I respect it nonetheless.) And, two of my three children were tested for cf, one extensively due to health problems.

Ok, now my opinion. Again, only my opinion. You have every right to feel saddened, angry, confused, etc when someone mentions their decision to abort a child because the child has cf. Especially, when they mention multiple abortions. As a parent, I feel saddened by the loss of life. However, not all people abort their cfer for their own convenience and to spare themselves the burden of the child. In many, maybe even most cases, they are doing it to spare the child from a life of pain and suffering. Of course, as you and I know, cf or no cf, there are so many different things that can bring suffering and pain, and every cfer is affected so differently, that it's impossible to predict whether a "healthy" child will have a more meaningful, easier, rewarding life than a cfer. In my opinion this rationale for aborting isn't valid. But, the instinct to shelter your child from pain and suffering is natural and I truelly believe and hope that most who abort cfers do it for this reason.

Also, for what it's worth, I honestly believe we shouldn't compare how "hard" it is for someone with cf vs the loved one of a cfer. They're just so totally different that to compare them does neither one justice.

I'm sorry that you're feeling saddened by the abortion post.
Mel

 

[anonymous]

I just wanted to tell you that if someone is in a relationship with you, they love you. My husband had CF, and there is no way I would ever trade him for someone else. It may comfort you that I never TRULY thought of him as a burden. I got frustrated with what CF did to him, but he was always a joy for me. I'm sure Mike considers you a joy as well.

BUT....we chose to adopt because of CF. Not because we felt our child would be any less wonderful if she had CF, but because we didn't want her to through that. And for my sake, not to lose my husband and daughter to the same thing.

I hope you don't think your family and loved ones consider you a burden. I can say in aprrox. 7 years of marriage, I never thought of my husband as such.

Allie, 32
Ahava 4, no cf

 

[anonymous]

Wonderful post, Allie. I'm sorry for the loss of your husband.
Mel

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br>christ, don't crucify me here!<hr></blockquote>

Would he do a thing like that? And even if he would, isn't he too busy aiming more hurricanes at casinos or kicking rubble down on some infidels?

Why would anyone <i>here</i> crucify you? Isn't rational inquiry on this topic allowed?

Q(uestions)

 

[Mockingbird]

You said it all; i feel the same thing emily. Threads like that bring up so many complicated emotions. <img src="i/expressions/brokenheart.gif" border="0"> Part of me wants to scream, about how selfish it is to have an abortion simply because someone doesn't want to deal with CF. But another part of me understands, which brings up questions about my own life that i perfer to keep hidden. It's heartbreaking no matter what, and I really hate that. =-(

 

[lovingBenandCambree]

I have to agree that the thought of someone aborting a child with CF makes me very sad as well. I am just so glad that my parents decided to have more children after my brother was diagnosed or I wouldn't be here. I posted to the abortion post and basically said the same thing that I am saying now but here goes, I love life. I am so thankful that I am able to be a part of such a wonderful existence. That I have been able to have all of the experiences that I have. I have a wonderful husband and an absolutely adoring daughter. Does it suck that I may not be able to see her grow to be a beautiful woman with children of her own. Yeah it does but nobody has that guarantee and I am just blessed enough to know that I need to cherish every moment I have. Life has not been easy but most of that is not due to Cf. These past couple of years have been the most difficult time I have had with Cf but it has made me so much stronger and appreciate life so much more. Yes at times I feel like a burden to my husband. We had to move take him out of school and have him get a career that he certainly wouldn't have chosen under "normal" circumstances all for the great cause of insurance, but to abort a child that could have a wonderful life given the chance is almost too much for me to comprehend. The fact that you can know whether a child will have some disease tells me this is a little person that they are killing and I do not understand that concept. The fact that I may not be able to have more children CF or not breaks my heart and to think that people can get rid of something so quick is uncomprehendible. I know it isn't an easy choice for someone but to do it once is bad enough to do it twice is just too much. Anyway there is my ranting.

Emilee

 

[JennifersHope]

Emily,

I am so glad to see you post.. I really miss seeing your funny sense of humor and wise input on here and most defintly your honesty..

I am especially touched but what you wrote because in many ways it is exactly how I feel, and it was nice to have someone to relate to.

I feel like such a burden to everyone that I can' t stand it. I also feel like so many ppls lives would be so much more peaceful if I wasn't born. I have a real delemia though because I do believe in God and I believe that everyone who was born was called to be born, so it really is a struggle for me.

I watch my dad suffer daily with worry for me. Since I started getting sick more often, my dad has lost all his peace ( not that he really evey had it) He is always yelling because he can't handle the stress... Everytime I see my dad yell or get upset, my heart breaks because he is so scared that he is going to outlive me it is making him crazy...I really think I am taking years off his life, in fact I know I am... I am not even half way honest with him about how I feel, I always tell him how fine I am ....and that my lungs are great... but He obsesess about everything.. (Remember I am a newer dx so this is new for him too)

I have a family member who was DX with breast cancer, she has long since fully recovered, but I remember when she was going through treatment.. I didn't sleep, or eat or anything.. I was so worried about her... I did everything I could to be there for her, cooked did errands what ever I could.. but I still felt like it wasn't good enough...I would have done anything to take away her suffering, when in fact I am not sure she suffered as much as I had in my head that she did.I just couldn't bear the thought of her having any pain....It was so much harder on me when she was sick, then it has ever been for me when I am sick, and I could only imagine that the same feelings are recipacated..to how others feel about me.. Not that I am so great or anything...but still the thought of being a burden kills me....

Also in my close relationships people who mean more to me then life.... my heart is so torn in half because I feel so gulity that they love me...I wish in some ways they wouldn't because I know their lives would be so much better and so less stressful if I wasn't in it..... I feel like I should do and be in so much more careful with my life because they may prevent them from seeing me from getting sick and yet at the same time I don't....

I feel guilty about the amount of money my parents spend on me paying for my meds.... Just to cover the copays.... One of the driving forces behind me finishing school is so that I can support myself, pay for my self and have a roof over my head and buy ppl great chirstmas presents.. I kid you not...I feel guilty about all the times I go in the hospital and then call my family for support.... I feel like I should always be okay and have it together just so they don't have any added stress,


It also makes me sad that someone would want to abort a baby just because they have CF.. I mean gosh... how does that validate my life? I do have so many ppl who love me and support me, and it is a double edge sword, because with love comes pain....

I wouldn't trade my relationships that God has given me for anything in the world.. I just wish I could get past the guilt and the feelings of being a burden...

Thanks so much for letting me add to this post....I have a lot more I need to express especially because I am on this new journey of accepting CF...

Love,
Jennifer
33 w/CF and Addison's

 

[anonymous]

It makes me so sad to see that so many of you consider yourselves a burden to those who love you. That's got to be so hard to deal with, and I hope you know that no one is obligated to be in a relationship with you, and these people love you all the more because they chose you no matter what, and they treasure every single moment they have. I always worried about my husband feeling like a burden, when, in actuality he was my strength most of the time.

Those of you who feel that way, know how deeply loved you are. They would leave if they didn't want to be there

Allie 32
Ahava 4 no CF

 

[Lilith]

Haha. And to think a few years ago I would have though that I was the only one that felt such things...boy, am I stupid. Emily, I agree with you wholeheartedly, and you didn't sound like a "deranged lunatic". I've had many talks, even arguments, with my boyfriend over how much better he could do and what a burden I am (and will eventually be) for him. I, too, feel like the biggest pain in the a** to my family sometimes. Even though they are always willing to help me (they even fight over who gets to push me around my wheelchair at amusement parks ^_^), I still feel like I'm in the way. And I know what you're talking about with the conflicted abortion issue. The way I see it, though, if someone doesn't want a child for whatever reason, better that they don't have it then to end up regretting it and then the child has to suffer.

One thing I always believed in, though, was survival of the fittest. And though we may not be physically perfect specimens of the human race, most (if not all) of us have a lot more strength and wisdom than half the people in this world. That, to me, makes us the fittest. If that makes sense to anyone. ^_^;; That thought usually makes me feel a little better. I hope it does something for you, too.

 

[Dea]

I am 32 with CF, have a younger sister (without) and a younger brother also with CF. I couldnt imagine my life without CF, but yet I also feel like a burden at times as well. When I read the post about aborting a child with CF, it made me sad as well. None of us enjoy having this disease, but at the same time, I would take it over not being born at all. I am also a parent. I agree that after knowing there was already one child aborted knowing it would be born with CF.....there shouldnt have been any more pregnancies, knowing the odds. I also look at it in the sense that if my parents had aborted my brother knowing he also had CF...wow...what a shame. He is a great person and we share a special bond because of the CF. I can tell him things that he understands...and he the same with me. Without each other, we'd be lost.
In agreeing with Emily...we are still people, having CF doesnt make us any less. It is sad that infants can be aborted because of something like CF. I know all those with CF will agree with me here when I say we are strong individuals because of it and we have such a different outlook on life than someone without CF does. We dont take anything for granted because we know our time here is special and we make every moment count.
Dea

 

[ReneeP]

Emily,

While I totally understand what you are saying, it broke my heart to read it. I was trying to read it out loud to my husband but couldn't even finish...The tears were stinging my eyes and my chest physically hurts. I'm so sorry you are feeling this way. The thought of my girls feeling this way is more than I could stand. I also feel very offended by the whole idea of people aborting because of CF. It makes me feel that I was being cruel to have given birth to a child with CF (or two in my case, though I only knew it with the second one). I do not regret my decision and have never considered my children a burden. I'm quite sure your family feels the same way. And I know you know that too.... Okay, now I'm rambling and not making sense... I just wanted to say you really touched me with what you wrote. Sometimes I get so mad at people for their thoughtless comments... One of my daughters came home from daycare when she was very young and asked me if she was going to die because she heard her daycare teachers saying that... People are so cruel...and inconsiderate. I hope the poster of that abortion topic reads your post.... Maybe she could get out of her fit of self pity and see things from another point of view...

 

[Emily65Roses]

In the end, I know you're right. My parents wouldn't go back and not have me, even though they have to pay for stuff. Haha. I know that. I'm too funny to let go of, even if I cost a lot. Besides, then who would my parents have to complain to them? *snort*

And then I have Mike who is an even bigger example in some ways. Mike *chose* to be in my life (he knew about the CF before we even started dating). He wasn't stuck with me like my parents were (ahaahahaa). We've even discussed him leaving (like a few of the others said), that I thought he could do better. He could have someone who will grow old with him, who could have his kids, etc. But every time we've discussed it and I tell him to leave, he says the same things:
1). I'm a big boy, I can make my own decisions
2). I'd rather have a little bit of time with you than none at all
3). I love you
4). Shut up

Ahahahaa. We used to have that conversation every few months (it's been over two years now). But after enough "I love you"s and "shut up"s I gave up on trying to "save" him from me and my CF. Haha.

No one who costs more than the regular kid in both time, money, pain etc will NEVER question whether or not they should've been born. But in the end, most of the time, I know better. My mummy loves me. She's buying me stuff to make tacos for dinner tomorrow. That just goes to show! Hahaha. I <3 tacos. Also, after you hear "I love you, shut up" enough times, you get the idea. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<img src="i/expressions/heart.gif" border="0">

 

[Allie]

<blockquote>Quote<br><hr>But every time we've discussed it and I tell him to leave, he says the same things:
1). I'm a big boy, I can make my own decisions
2). I'd rather have a little bit of time with you than none at all
3). I love you
4). Shut up
<hr></blockquote>

I remember those conversations...also we had the one about how he didn't want to marry me, because he didn't want to 'chain me down'. I told him if he didn't ask me to, I planned on asking him, so he should be the gentleman and go ahead...sure enough, a month later..<img src="i/expressions/heart.gif" border="0">

But really, when you fall in love there can be NO substitute for that person who completes you, CF or not

 

[anonymous]

Emily,

Like Renee, your original post left me feeling down. But I'm glad that you expressed your feelings and worked through it, with a bit of humor, I might add.

Funny, but I often feel as if my husband and I are the ones that burdened Sami with this disease. Damn genes!

You have opened my eyes to how my daughter will probably feel someday down the road. I hope that she handles it with the same maturity and humor. You have taken the high road with all your posts ( in regard to the cf terminations). I can't say I could do the same, so as a mature adult, I have kept my thoughts to myself. But it angers me, nonetheless, that the topic made you feel this way. Just know, that I don't believe ANYONE could ever see you as a burden.

Maria (Sami's mom)

 

[anonymous]

Dear Emily and other posters with CF

Your post and replies have really touched my heart and have saddened me very much!!! I hope the poster of the abortion topic also reads your thread, the whole time i was reading her posts i was thinking about how this would effect those of you with CF because i knew how it angered me to know that one could come to this website looking for support about terminating a baby with CF ( 2 babies )

I would have never terminated my babies, and i hope that my daughter knows that she is not and will not ever be a burden to me or her father or her siblings. I am against abortion but i do not condemn her for her actions.I do find it hard to believe that she is going to do this to her second CF baby.

As i was reading your posts, tears filled my eyes and my heart ached for you. I know what a joy my child with CF has brought to me, how loving, how compassionate and how caring she is , what a true blessing she has been and i am sure your mother feels the same. I do not think that any of us parents of children with CF would have never wanted to have the beautiful children that we have, even with CF!!!!!
I think as parents we would do anything for our children, even if it meant our own lives. One day when my daughter is dating i hope that she has a boyfriend as caring as yours and that she will be what is important to him, and that he will never walk away from her because of CF, people that truly love one another are there for each other for better and for worse.

To those mothers with CF, i do not have CF but i can truly understand how you feel about not being around for your children and watching them grow up into adults, i lost my mother when i was 6 years old and it was not because of CF. My mother died due to a brain aneurism and i have always had the fear of leaving my children at an early age. I agree that all of us need to live each day as if it may be our last because we are not promised tomorrow.

I always prayed that i would be blessed with children and i promised God that i would take care of my children no matter what disease or illnesses that they may have. My daughter is one of the biggest blessings that i could have ever been given and i truly hope that all of you feel the same way.

Kaitsmom<img src="i/expressions/rose.gif" border="0">