My Husband Wants Another Child

[Allie]

I don't post anon, I stand behind this forever.

<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Your new child will possibly suffer for all of his/her life. Just think about that. </end quote></div>I think you're way off with that one. I'm not sure, but I'm betting most people here agree with me. </end quote></div>

Nope. I watched my husband die, and any parent that could watch Ry's last few months and still say they're okay with thier kid going through that.....I don't know, has always bothered me. CF involves a lot of suffering, or else we wouldn't get make a wish and all that stuff, and people wouldn't beg for a cure.

 

[kybert]

i dont agree with you either. almost everyone says "its not so bad" until cf starts to affect every aspect of their life and then 'that' time comes. only then do they finally realise how ugly cf is.

 

[mellimoo91]

Just thought I'd have my say. I wasn't going to get involved in
this debate as I figured no one would  really hear me out
anyway and my opinion would be dismissed as ignorant immature etc.
because I'm only 15 but I'm going to say it anyway because I think
I should be able to! Okay well I think it is just a very individual
thing so no ones opinion is neither right nor wrong. No, I don't
have two kids with CF like you said you wanted to hear from but my
parents first had my sister who was diagnosed at birth with CF, yet
despite that decided to have me regardless. And I really admire
them for that. I understand that some babies with CF are healthier
than others, and my sister was and still is fairly healthy. Yet I
know my parents nor I would want to change a thing. True, I too
have been fairly healthy and I'm not in the final stages of CF so I
agree I haven't realised how 'ugly cf is'. Yet I've lived 15
wonderful years already and I wouldn't change them for the world.
Despite hospitalizations, 50+meds a day, breathing treatments,
physio etc. I have a wonderful family and  a wonderful life
and I know that I personally would rather have lived those 15 great
years with CF, then not have lived at all. Once again I would just
like to clarify that I know everyone is different. I am not
attacking anyone for their opinions in any way, and I know that I
have had it pretty good so far so my opinions may be slightly
biased. LUCYJANE - I agree that whatever happens happens for a
reason. Just follow your heart (eek seriously cliche I know!!) and
I hope everything turns out for the better.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mellimoo91</b></i>

Just thought I'd have my say. I wasn't going to get involved in
this debate as I figured no one would  really hear me out
anyway and my opinion would be dismissed as ignorant immature etc.
because I'm only 15 but I'm going to say it anyway because I think
I should be able to! Okay well I think it is just a very individual
thing so no ones opinion is neither right nor wrong. No, I don't
have two kids with CF like you said you wanted to hear from but my
parents first had my sister who was diagnosed at birth with CF, yet
despite that decided to have me regardless. And I really admire
them for that. I understand that some babies with CF are healthier
than others, and my sister was and still is fairly healthy. Yet I
know my parents nor I would want to change a thing. True, I too
have been fairly healthy and I'm not in the final stages of CF so I
agree I haven't realised how 'ugly cf is'. Yet I've lived 15
wonderful years already and I wouldn't change them for the world.
Despite hospitalizations, 50+meds a day, breathing treatments,
physio etc. I have a wonderful family and  a wonderful life
and I know that I personally would rather have lived those 15 great
years with CF, then not have lived at all. Once again I would just
like to clarify that I know everyone is different. I am not
attacking anyone for their opinions in any way, and I know that I
have had it pretty good so far so my opinions may be slightly
biased. LUCYJANE - I agree that whatever happens happens for a
reason. Just follow your heart (eek seriously cliche I know!!) and
I hope everything turns out for the better.</end quote></div>

 

[melleemac]

I do think it is up to the individual also, as I said I know I couldnt do it again. But.....I just want to say, my boys are only 12 and I have watched them go through hell and back, and yes they do suffer at times. Not all children that are diagnosed today have an easy time. Yes there are better treatments, and the median age is higher, but there are certainly no guarantees! And no matter what anybody says, have two children with cf is hard, not just on the patient but on the whole family.
Just my opinion!
Mel

 

[amber682]

Let me figure out how to word this... I know cfers endure a lot of suffering throughout their lives. But its not all suffering all the time. There are good times and bad times. I like to think my son will not spend his entire life suffering. Although the bad times can be really bad, he will also have some really good times. Don't get me wrong, this disease and what it could do to my son scares the hell out of me. Believe me, I've spent many nights crying by myself thinking about it. I've cried many times reading about other people's struggles with this disease, for them and for their families, and also because there's the chance that my son will face it someday. Sometimes I cry just because its not fair to him, he shouldn't have to do all these treatments and medicines, he shouldn't have to take pills every time he eats, he should be outside playing instead of sitting in the house doing nebs and chest pt. He should have spent the last month of summer playing outdoors or at the beach, not in a hospital room hooked up to IVs. It breaks my heart. I personally don't think I'll have another child. I just could not take that risk. If I were to get pregnant by accident, then that's another story. Me and my family would have to deal as best we could. But I'm not going to try to get pregnant and just hope for the best.

 

[EnergyGal]

I think the person who started this thread is very brave and I admire that she is confronting a large audience on this issue. I say go with what is right for you and as long as you can confront and tackle all obstabcles then you are the right person for this commitment of love and understanding.

There are many options that you are all aware of so my questions is to the healthy individuals who are partners of CF spouses.

IF one does not believe (a CF-potential Parent) in giving birth knowingly to a person with CF because of all of life's challenges even though you would love them regardless, then why would someone who is healthy without CF knowingly marry a person with CF? How does one think, "I do not believe that parents should knowlingly give birth to a CF child but it is fine to date and marry someone with CF"? There is a world of difference between these two life's choices but there is definitely a parallel between them. You are both commiting to a life with CF.

 

[Emily65Roses]

My answer to your question, Risa... I don't think people have a whole lot of choice who they fall in love with, either. I don't think Mike thought "Hmm, well she's dying, so I had better fall fast." I think he couldn't help himself, and fell, despite what he knew. Now he's just dealing with that.

 

[EnergyGal]

If a family wants to have more children with CF because they love what they can create then in some way it is very similar. That is the way I see it. Sorry if you do not agree. <img src="i/expressions/face-icon-small-smile.gif" border="0">

To me Marriage is like adoption (pardon the metaphor) in my eyes. You are adopting a man or woman who you love regardless of illness and you will enjoy and love them no matter what lies ahead. You choose if you want to live a long or short life with your mate if one has an illness. Some believe in living so they do not think about the death part or if they do then they just appreciate what time they have together. Till death do us part? A man or woman who marries one with a disability has choices just the same as parent who could give birth to a cf child. It is always a choice. Love has no boundaries as they say.

 

[anonymous]

Risa,
I don't see the parallel really except that every person is unique anbd of value -- and loveable.

I fell in love with the man - not his illness. Didn't choose the illness. Didn't choose that the man have the illness. Would have taken his illness away from him and taken it on myself if I could have.

Parents who have a kid when they know they could have a CF kid are in a way choosing that their kid have CF.

Obviously, people with CF are lovable both to their parents and their spouses. But that's not BECAUSE they have CF. (Though it is true that an adult with progressive terminal illness has had their attitude and values highly impacted by that fact so in some ways the CF does play a role.)

Everyone has to make their own choice about whether or not to have kids.
I just know I wouldn't wish the illness on my worst enemy. I sure wouldn't want to take a 25% chance that my kid would have it. It's not like parents can or will choose to create a person from every egg that ovulates. Why choose the egg that you know has CF?

Spouses come into the picture after the fact. And as Emily says we just "deal with it" - sometimes well and sometimes crappy. It is just "part of the package" like exwives and stepchildren and other debts and assets.

Of course I am thrilled that Rip's parents just went for it as everyone did in those days. He was my soul mate - and I waited a long long time to find him.

-LisaV

 

[EnergyGal]

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

If a family wants to have more children with CF because they love what they can create then in some way it is very similar. That is the way I see it. Sorry if you do not agree. <img src="i/expressions/face-icon-small-smile.gif" border="0">



To me Marriage is like adoption (pardon the metaphor) in my eyes. You are adopting a man or woman who you love regardless of illness and you will enjoy and love them no matter what lies ahead. You choose if you want to live a long or short life with your mate if one has an illness. Some believe in living so they do not think about the death part or if they do then they just appreciate what time they have together. Till death do us part? A man or woman who marries one with a disability has choices just the same as parent who could give birth to a cf child. It is always a choice. Love has no boundaries as they say.</end quote></div>


I just edited my post Lisa. Thank you for sharing your thoughts.

 

[anonymous]

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

My husband and I have two sons, 12 yr old w\o CF and 11 yr old w\CF. My husband wants another baby and so do I, but I'm scared. We have always wanted more children, we originally wanted four then we stopped with our two sons and now my husband wants more. I don't want to feel guilty or be accused of being selfish for bringing another child into the world that would have CF. We have talked with our CF doctor and she is wonderful and supportive. We know it is only a 25% chance for the child to actually have CF, we know all the scientific details. <b>Now I am asking those of you with more than one child with CF, how did you decide, do you have any regrets and do you have any advice? </b> I am a firm believer that what ever happens...happens for a reason. I have an appointment to have my IUD removed Oct. 2 and told my husband if I get pregnant by March it was meant to be, if not then it must not have been meant to have another child.</end quote></div>


There are many people making valid points here but the original poster of the question is asking advice from parents of more than one cf child. Maybe others who do not fit this criteria might like to start their own thread.

 

[anonymous]

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

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



If a family wants to have more children with CF because they love what they can create then in some way it is very similar. That is the way I see it. Sorry if you do not agree. <img src="i/expressions/face-icon-small-smile.gif" border="0">







To me Marriage is like adoption (pardon the metaphor) in my eyes. You are adopting a man or woman who you love regardless of illness and you will enjoy and love them no matter what lies ahead. You choose if you want to live a long or short life with your mate if one has an illness. Some believe in living so they do not think about the death part or if they do then they just appreciate what time they have together. Till death do us part? A man or woman who marries one with a disability has choices just the same as parent who could give birth to a cf child. It is always a choice. Love has no boundaries as they say.</end quote></div>





I just edited my post Lisa. Thank you for sharing your thoughts.</end quote></div>


If it was important to me that my kids have my and my partner's genes would head towards PGD myself if I wanted more kids after having a CF kid. But that's just me.
You say that love has no boundaries. That I agree with. But the saying that "god never gives you more than you can handle". That one I think is crap. The mental hospitals of this country are fulll of people who have be4en given more than they can handle - even with help.

And love can sometimes make you think you can handle more than you can. I think if parents want to know what it's like to have 2 CF kids they should talk to parents who have LOST 2 cf kids. I was the anon who worried out loud about the motional and psychological consequnces to the parents to have 2 kids go thru end stage lung disease and die from CF. No matter how ready someone thinks they are for such a thing I don't think you can possibly know how devastating that is.

To loose 2 parents, a couple of spouses, several aunts and uncles, many friends. We are pretty prepared to do that these days. But it has been several generations since we are prepared to loose 2 kids - even if we are 60 when they die. It takes not only strength to do that, but a whole different attitude to life and death to handle that (different than the attidue of most of society). Only a very few parents really have moved to that place. And if they have, they seem so special to me that I would hope they would adopt kids with progressive terminal illnesses....and I suspect that they would choose that route rather than to create more kids of their own.

-lisaV

 

[thelizardqueen]

Well all I know is that I'm 25 years old (or rather turning 25 in about a week), and I've had only 3 hospitalizations in my entire life, and I've barely scratched the surface of the "darkside" of CF, if at all. And no, I don't see myself as a CFer "suffering" all my life. So I take a few breathing treatments and a handful of pills. Big deal - I carry on with my life, and nothing has really stopped me from doing what I've wanted to do in my life. Sure I've gone a bit down hill this past year, but its nothing that I can't turn around. Sure, in the end I will "suffer" and die from CF, but everyone dies, people without CF suffer before they die as well. To me, I'd rather die from CF then die in a firey carcrash, or cancer or some other disease that is hard to endure endstage - and if I had another disease like cancer that killed me, it would also be hard on people to see me die - regardless of whether you're healthy or not its hard to watch someone die.

So to answer your question, even though I don't have kids with CF, I would try naturally to have children even if my partner were a carrier. I mean think about it - I could get my partner tested, and he could come back as a non-carrier, and then fast forward to 9 months later and my child is being diagnosed with CF with a couple of rare genes that didn't pass the screening tests. And could quite possibly die young anyway. I like to think that because they would have my genes, they would live long like me or even longer. Medical advancments for CF have come a long way since I was diagnosed.

 

[thelizardqueen]

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

Parents who have a kid when they know they could have a CF kid are in a way choosing that their kid have CF.</end quote></div>

I don't really agree with this. Its a 25% of having a CF child if you do not have CF, but rather are carriers yourself. Its a 75% chance that the child will not have CF, so I don't really think with those statistics that you are choosing to have a child with CF. You are going with the better odds of not having a CF child - sort of like hoping for the best but preparing for the worst. I know that if I had a small chance of having a child with a disability - I wouldn't see it has be CHOOSING to have that disability for my child. Its not like there's an option and you're choosing one.

 

[thelizardqueen]

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

the original poster of the question is asking advice from parents of more than one cf child. Maybe others who do not fit this criteria might like to start their own thread.</end quote></div>

I think people with CF should be able to have a say in this thread. After all, she's worried about how her CF child will turn out in a way, in whether its wrong to knowingly try for a child that may have CF. We are adult CFers - we've lived long lifes, and some of us haven't been "suffering" all our lives, so shouldn't we be able to tell her how we turned out and our opinion? It is after all a PUBLIC forum.

 

[anonymous]

Well, Liz. The world is a better place because you are in it. And it would be a better place if any of your kids are ever in it.

But I think it would be extra hard work and complicated (if not impossible) for you to offer a kid with cf the same care that you receive. One thing you do to stay in good health is to avoid other CFers --particularly those who are colonized with nasties. Unfortunately, that's not something you can offer your future kids. So statistically it's unclear if your kids would have as slow a progression as you have up until now. And in all honesty two sick folks would be a real handful for a husband to take on.

But again. This is a very private decision. Almost the most private. Just a decision that I hope everyone uses both their heart and their head to make since in my experience you need both on board to see these kinds of decisions through .
-LisaV

 

[EnergyGal]

Even though both relationships might travel down a similar path in life, each party choosing a part of CF has not walked the same exact experience. IT is much different for me to give an opinon from my perspective rather than walking the shoes of the other person that lives with cF wether it is a spouce or your own child. That is why I feel I cannot judge this situation rather I present my view points as a CF patient. If I was a parent who could give birth to a child, I might have a totally different view point.

It is all a matter of what you decide and there are never any guarantees. Your choice is what you live with and that is your journey.

Everyone has a right to their decision and should never be judged for it.

We are all so analytical. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[katyf13]

I blogged about this already... but I'll jump in again. I just want to say I don't think there's a big parallel between falling in love with a cfer and planning to have a baby with (a huge chance of having) cf. I love Mike more than anything. I love every single thing about him. Do I wish cf would go away? YES. Does it suck that he is in the hospital AGAIN right now? YES. Does it suck that doctors use the words "end stage" and tell him he would have 2 years tops withouth the transplant? YES. Treatments today are better and the lifespan is increasing, but would I want to knowingly have a cf baby so they could go through all of this at 48 instead of 28? NO!!! EVERYONE has hardships in life, and my kid will too, but if I can prevent some, I will. I will love my baby (biological OR adopted) no matter what. There are many illnesses my baby could be born with but if I can prevent them from having one that I know about, I will. I know I "could" handle having my two closest relatives, husband and baby, in the hopsital, but I certainly don't want to put everyone through that if I can help that.
If "anon" is going to tell me I need to be saved by the lord or whatever like you did in my blog, at least don't do it anonymously... I got quite a chuckle out of that one.

 

[Allie]

I don't agree at all that it's the same as marrying someone with CF. If you give birth to child, you know that by giving birth, you are giving them a 25% chance of having CF. Ry was already born, already had CF...my choice to marry him caused him no hurt or suffering.