Provoking Thread

[anonymous]

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

Ok, thanks for clearing it up for me cf mom.</end quote></div>

<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/heart.gif" border="0">

a mom with cf

 

[ladybug]

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

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





And, do you guys get that if you have cf and have a kid there's a pretty big chance your kid will have cf? Do you really need the birthing experience bad enough that you're willing to make a little person go through cf hell??



</end quote></div>



Im confused now, so according to Debi's daughter, if I have a child then my child could possibly have cf even though my husband is not a carrier? <img src="">



I always thought that if your spouse is a carrier then your kid has a chance of being a carrier or have cf and if the spouse is not a carrier then the kid can only be a carrier or no carrier at all. Am i understanding this wrong? Will someone straighten this out for me.</end quote></div>

If your husband is not a carrier (usually they can do a 99% accurate genetics test for this, but since there are unidentified strains of CF, it is still possible) the child WILL for sure be a carrier of the CF gene as he/she inherits it from you (you have 2 CF genes and that is why you ended up with CF). Your husband, since he does NOT have CF would only have one to contribute, meaning if he's NOT a carrier of any CF genes, the baby would only be a carrier of one of your CF genes (since you only contribute one.) If, in fact your husband IS a carrier of the CF gene (in the unlikely event he has an "undiscovered gene", the baby still has only a 50% chance of getting it. This is because you will still contribute your one gene, and you have a 50/50 chance that he contributes the CF gene. 2 CF genes would make a CF baby. Make more sense?

My husband is not a carrier, so the likelihood of our baby having CF would be like .8-.9% based on the event that one of the "unidentified CF genes" is passed on from him. I think some genetics tests test for more genes, while others only test for the most common. So, it is important to get the most comprehensive test possible to decrease your "risk" of a false negative. Make sense?

Gosh, I hate genetics. <img src="">

 

[ladybug]

<b>Here's a better picture:</b>

SCENARIO 1:

<b>ME (with CF)</b>

X - CF gene

X - CF gene

<b>HUSBAND (carrier)</b>

X - NO CF gene (if he does not also have CF)

X - CF gene

<b>BABY</b>

X - CF gene (from me)

X - CF gene OR NO CF gene (from husband)

BABY has 50/50 chance of having CF based on which gene hubby gives.

BABY is carrier of one CF gene if does not have CF and carrier of 2 CF genes if does have CF (just like me).

----------------------------------------------------------------------------------
SCENARIO 2:

<b>ME (with CF)</b>

X - CF gene

X - CF gene


<b>HUSBAND (no carrier)</b>

X - NO CF gene

X - NO CF gene


<b>BABY</b>

X - CF gene (from me)

X - NO CF gene (from husband since not a carrier)

BABY has little or no chance (based on false negative) of having CF since husband does not give the second CF gene.

BABY IS a carrier of ONE CF gene even if does not have CF.

 

[anonymous]

Sonia--you have put a lot of effort and thought into your posts on this thread. Thank you! I think you are going to be a great mom if you decide to become one whether through childbirth or adoption.<img src="i/expressions/heart.gif" border="0">

mom with cf

 

[ladybug]

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

Sonia--you have put a lot of effort and thought into your posts on this thread. Thank you! I think you are going to be a great mom if you decide to become one whether through childbirth or adoption.<img src="i/expressions/heart.gif" border="0">



mom with cf</end quote></div>

Thank you. This is one of the nicest things I could hear and one of the nicest things that anyone has said about me. I appreciate it. <img src="i/expressions/sun.gif" border="0">

 

[anonymous]

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

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



Sonia--you have put a lot of effort and thought into your posts on this thread. Thank you! I think you are going to be a great mom if you decide to become one whether through childbirth or adoption.<img src="i/expressions/heart.gif" border="0">


mom with cf</end quote></div>


Thank you. This is one of the nicest things I could hear and one of the nicest things that anyone has said about me. I appreciate it. <img src="i/expressions/sun.gif" border="0"></end quote></div>

I meant what I said. <img src="i/expressions/heart.gif" border="0">

mom with cf

 

[princessjdc]

Thank you Ladybug for your reply, like I said my husband is not a carrier, he was tested when we got married 5 years ago, and according to my doc they take their tests to a good lab, so I dont know how many genes they test for, but if my doc says that theyre good then I suppose they tested for a bunch, not really sure. My doc recommended my sis and her hubby to get tested at his office, but like my stubborn sis, she doesnt like to listen to big sis so she had to do it her way and wait until she got pregnant to get tested, they got lucky cause they both tested positive for being a carrier. They seem to think they missed up on her hubby's test, and thought maybe getting a second test done at my doc office. They never will, they should of listened to me in the first place.(that part was probably off topic) Thanks again for all the info on the carrier gene stuff.

 

[anonymous]

I am the mom of a 1 yr old (adopted) child. I suppose I am atypical as well in terms of health and so on. I have never been hospitalized (for anything to do with cf,) don't cough, have never done iv antibiotics, nor do I do nebs. This question is mostly for the kids, then, I guess... would you recommend not telling my son until it becomes a necessity??? You see, many important people in my life have no idea that I have CF. It's been very easy to hide for me. I haven't told anyone since I told my husband 7 years ago. He had no idea. I don't want anyone to know about it anyway.

Is it ok to keep this secret from my own son???

Thank you

 

[Landy]

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

I am the mom of a 1 yr old (adopted) child. I suppose I am atypical as well in terms of health and so on. I have never been hospitalized (for anything to do with cf,) don't cough, have never done iv antibiotics, nor do I do nebs. This question is mostly for the kids, then, I guess... would you recommend not telling my son until it becomes a necessity??? You see, many important people in my life have no idea that I have CF. It's been very easy to hide for me. I haven't told anyone since I told my husband 7 years ago. He had no idea. I don't want anyone to know about it anyway.



Is it ok to keep this secret from my own son???



Thank you</end quote></div>

I struggled with when/what to tell my daughter too. If I remember correctly, I told her when she was approx in the 3rd grade. I did it over the summer so she didn't have to go to school the next day & be preoccupied with this new news.
One reason for doing so was that I didn't want her to hear it from anyone else first, not to mention that obviously she needed to know at some point, it's just hard to know when to tell them and how much.

I think how you handle telling your child about your CF is how they will handle it. I stated it very matter-of-factly, didn't cry, didn't say it in an apologetic tone of voice and didn't say "Mommy's going to die from this some day". I didn't want her to dwell on that & worry her whole childhood away wondering how long mommy has left.
She knows that my older sister died of CF so she knows that can be a reality and now that she's older I answer any questions that she has on a more deeper level then I would have in 3rd grade.
I also include the fact that transplant may be an option too.

Obviously we don't all agree with my view on the forum, but I also tell her what I believe...that God has a plan for me & I just trust in that plan.
Hope this has helped. If you have a sign-on name, feel free to private message me if you have any other questions.

 

[JennifersHope]

The response from Debi's daughter was so hard for me to swallow.... Like a slap in the face of reality.. and ouch does it really hurt... BAD.. Now granted it is only one person's perspective and I am sure for every negative one I could find a positive one but this post sort of burst my bubble... and really made me think.. Someone actually emailed it to me, oddly enough I didn't read this thread before it was emailed to me....

I can't imagine how horrible it can be for a child to grow up wondering when their parent is going to die... I remember as a child if my parent's were not home on time, I called the local hospital to see if they were there.. I really was always afraid they were going to die and leave me.... and they were healthy I am sure it is much worse for a child who has a sick parent..

I do think that their are things that can be done to prevent a child from feeling like their mom was a freak or not human.. just because of the vest... things can be done and jokes and games could be made out of it... I know a guy who used to give his kids... "vest rides" where he would lay down on the floor and they would sit on the vest.... so I do believe some of it can be controlled by the attitude and way it is presented...

I do know what it is like to worry as a child, I worried daily about my parents getting a divorce.. same concept... is all I thought about in school.. thought my mom was going to kill herself etc.. and it sucked... so I wonder if the bottom line is kids are going to worry about things....

I don't know I am asking, is giving a kid all you love and support while you are alive such a horrible thing for them.. I read somewhere, I don't know where but that it is easier for a kid to deal with a death of a parent then it is a divorce... (again not sure where I read it I would have to look) but since I am just thinking out loud anyway... I don't know I know in my parents divorce my dad married my moms best friend and it sucked..... so I can't imagine being in more pain than that as a child... certainly being loved and supported and then having a parent die would have been easier for me then years of being worried about my mother... which at 34 I still am...

I am not saying I am right... I am just wondering.... As you all know, I am considering a hysterectomy but have been dead set against it because I really want children.. but not if I am going to cause them to suffer.. or have such a horrible life that they are worried I am going to die or something.. I would never want to do that to a child.........

Jennifer

 

[anonymous]

This really is an eye-opener....especially Debi's daughter. Kids pick up on EVERYTHING. Even if you go to great pains to protect them and prepare them for things, they are still scared...just like adults are.

 

[anonymous]

Sonia. I would say that with the examples you give, that Debi's daughter's points would still ring true. Just my opinion, but yes, they would still be very much true.

 

[anonymous]

I am the anonymous with the 1 yr old. Deb's daughter's story really hurt me as well. I understand that it was hard on her, however, this is one person's opinion. Actually, a very selfish opinion. Of course kids are always selfish. My mom has really bad asthma, and it was really, really bad when I was a kid. Yes, it is scarey to see your mom having an asthma attack, but she is the best. I do NOT think she was selfish in wanting to have me because she has asthma. I read this letter, reflected on it, cried a bit, and realized that I am a responsible adult. I will do what I think is responsible and good. I truthfully (and 100%) know that I will be here to see my son have children of his own....I WILL be a healthy old wrinkly grandmother one day!!!

 

[anonymous]

Also, Lynda, thank you for the offer and the advice. I guess I will just have to feel it out when he gets a little older!!!

 

[anonymous]

The last year of my late husband's life was so difficult and scarey for his 21-year old daughter that she just stopped visiting. She just couldn't handle it at all. Broke my heart for both of them.

Do NOT underestimate the amount of pain your loved ones will go through watching you die or worrying about whether or not your are actively dying. The disease is progressive. Right now most of you are living with your CF. At some moment in time it will become apparent to others (if not to you) that you are dying from your CF.

It is a real consideration where children are concerned.

-LisaV

 

[BigBee]

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



Do NOT underestimate the amount of pain your loved ones will go through watching you die or worrying about whether or not your are actively dying. The disease is progressive. Right now most of you are living with your CF. At some moment in time it will become apparent to others (if not to you) that you are dying from your CF.



It is a real consideration where children are concerned.



-LisaV</end quote></div>

Well put Lisa. I hate to see people deluding themselves into thinking that a fatal disease and a chronic disease have comparable impact to a child. They don't. Especially in this technological day and age - once kids learn of the diagnosis, they have easy access to the stats - which are at this time a life expectancy of 36ish years. Years ago you one could get away with not telling the "whole story" about what having CF means. Not anymore. Once kids are old enough to google - they'll know.

 

[anonymous]

Thanks for suggesting that we may not be aware we are dying of CF, that was very considerate and tactful. Is there anyone who is not going to die someday??? Personally, I am LIVING with the disease and plan to do so until the day I die-- of CF or something else.

 

[BigBee]

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

I am the anonymous with the 1 yr old. Deb's daughter's story really hurt me as well. I understand that it was hard on her, however, this is one person's opinion. Actually, a very selfish opinion. Of course kids are always selfish. </end quote></div>


Just have to step in here - I think it was incredibly unselfish of Debi's daughter to share her story. Opinions, are by their very nature, selfish - relating to one's own experiences. But I don't think that's what you meant and although I most often stay out of the fray - I take great issue with your comments quoted above. You are correct that it is one person's opinion. This is Debi's daughter's life - and relaying how it affected her is not selfish. Secondly, I'm really really sorry you feel that kids are always selfish. I don't find that to be the case.

 

[anonymous]

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

Thanks for suggesting that we may not be aware we are dying of CF, that was very considerate and tactful. Is there anyone who is not going to die someday??? Personally, I am LIVING with the disease and plan to do so until the day I die-- of CF or something else.</end quote></div>

I understand what you are saying. I support you in this effort.
However, at some point all who die from an illness enter an actively dying part of the process. Oddly enough in my experience this is often more apparent to the people who are not dying than to the one dying. That is what I meant when I wrote "At some moment in time it will become apparent to others (if not to you) that you are dying from your CF. " In my experience, at that time the progression of lung disease speeds up to an enormous amount.

Again, in my experience, how old your kids are and where you are in the progression matters immensely as to how well the kids deal with the diagnosis and the possibility of your death. When my husband was hardly disabled at all, his kids dealt pretty well with it. They called him the "come back kid" as he went thru his ups and down. Even during the last few years, his eldest kids who were old enough to be married and have kids of their own, were "OK" with it. (But they were not able to help at all and visited pretty much only when he could "pass as well".) His youngest, (his daughter with who he was the closest), was the one who had the hardest time. Just as it was time for her to leave the nest and go out on her own, her father began his obvious decline. Juggling these competing needs of her (to become an independent adult and to be a dutiful loving daughter) just overwhelmed her. Her pain was palpable.

Again, I am just sharing our family's experience. Just as Debbie's daughter shared hers (and thanks so much for doing so). You can call me selfish or inconsiderate or tactless from now until kingdom come. Doesn't matter. Someone asked. And I've answered - from my experience. That's all I can do.

Take care,
LisaV

 

[anonymous]

...and I feel a need to stand up for Rip's kids (heck ALL kids)

They did the very best they could every minute of every one of his 59 years.
They are generous hearted people - all of them -- just like their dad.
But they were KIDS for cripes sake! He was their DAD! Even the older ones in their early 30s when he died still were in NEED of a father.

The oldest got thru it with sizeable amounts of denial. (I had to call them up and just about scream at them to get thru that denial so they visited the last weekend before his death. "Oh, you know dad" one said. "He always bounces back." "Not this time", I replied.)

The youngest, the daughter, is a wise one. And not one to use denial as a coping mechanism. Without the use of denial, though, she was in terrible terrible pain those last 2-3 years.

They are not afraid because they are selfish. They are afraid because of love and BECAUSE THEY ARE KIDS and KIDS NEED LIVE PARENTS!!!
-LisaV