A bit awkward

M

Mockingbird

New member
Does anyone else feel a little weird whenever someone comes on here finding out their child has CF. They're always saying how terrible it is and how devestating. Of course it is a bad thing, I'm not arguing about that, =-) it's just people say, "I have a child with cf, I'm so devestated, it's like the end of the world!" While I'm sitting there having cf, It's kinda like people who tell me I'm gonna die at a young age, except I can't get mad about it. =-) And of course I know that isn't what they mean.... When they say stuff like that, they accidently imply it, That's what I'm trying to say! .... I think. =-) Anyway, i'm not mad at anybody for anything like this, I just noticed today and was kinda wondering. =-)

Jarod
22 w/cf
 
N

NoDayButToday

New member
It doesn't bother me. It can be awkward, but I actually like telling the expectant parents that it is not the end of the world...and I'd imagine it's great for them when they see CFers in high school, college, graduating, getting married, having kids of their own, working in good jobs, etc.
The one post that has irked me was the one I read just this morning, where, I felt, the implication was "How bad will CF be for this baby so I can decide about aborting"
 
L

LilStrawberyShortness

New member
-pokes jarod- thats just cause your special <img src="i/expressions/face-icon-small-smile.gif" border="0"> hehe but yeah i know what you mean..but you have to think about how scarey it is for them..your used to it..youve had it for 22 years (yes?) they are just finding out now...its a very scarey thing...especialy when you dont know anything about it
 
E

Emily65Roses

New member
Jarod, I also feel that way sometimes. But I never take offense to it, because I can only imagine how that must feel, to learn your child has a disease and your doctors are telling you the child will be lucky to live to see 32. When we're sitting here knowing many of us won't even make it that far. I guess I'm pretty neutral on it. When I think about it, it is a little odd. Here the parents are, coming on, saying how devastating it is and we've been living with it for X number of years (21 for me). But at the same time, they've come on kind of outright challenging their information on the subject. Saying what the doctors have told them hoping some of us will counteract what they've heard. I'm just glad we get that chance. Haha.

"Yeah well doctors said I'd never see 18, and now I'm 21 and still with pretty high PFTs. So there!" <img src="i/expressions/rose.gif" border="0">
 
C

CheerColl

New member
Jarod! I agree! I was just feeling the same way. I don't know if there is a word to describe the feeing, but akward seems the closest. Of course, Coll, I agree with you, too, and I wish I could tell all the new CF parents how good my life is even with CF, and with all the advancements that her child will have alot more help (in the way of new treatments and meds) from the get-go than I did when I was born in 1983.

However, I am getting a little tired of all the posts about the "absolute devastation"! I mean, I wish we could all direct these moms to one message board, so they could all get their questions answered once, not three and four and five times! Oh well! Good post, Jarod, thanks for prompting me to get my thoughts out!
 
J

jenhum

New member
I'm going to have to disagree with the majority here. My heart goes out to the parents who have just found out that their kid has CF. I'm sure my parents were devastated when they found out, and I sure wish there was a site like this that they could have visited to make them feel better. I plan on having my fiance tested to see if he is a carrier, so this probably won't happen, but if I found out my baby had CF, I'D be devastated! It's a tough life sometimes and I wouldn't wish it on anyone.

I know what y'all mean about the awkwardness, but it's important to remember that even though we visit here often and have lived with CF for a long time, these boards are also for people that are just starting the journey. I am personally really happy that we get to share with the new parents our lives so that they can be encouraged.
 
L

luke

Guest
I am agreeing with jenny on this one... I am sure our parents felt the same way when they found out their child had CF. I am not a parent but I know the feeling of helplessness and it is a miserable one. To be a parent in this situation is probably the most frightening thing they have ever encountered and they are just looking for support. I am positive they are too upset about their sick child to worry about using politically correct jargon when describing their feelings and looking for help.


luke 29/cf, 15 IV days to go
 
A

anonymous

New member
Jarod, I'd like to talk to you about this. I posted a week ago after my daughter, Bonnie-Rose was diagnosed. When I was in college 20 years ago I dated a guy who had a nephew with CF. All I could remember was that they didn't exptect him to reach adulthood. I had no idea how far the treatments had come since then until I started reading on this forum. My daughter is adopted, and part of the reason we adopted her was so her brother, also adopted and with autism, wouldn't be alone after my husband and I are gone. Since we are in our fourties we can expect to die while Kevin is still fairly young. So yes, we were really sad to think that not only would we lose B-R at a young age, but that Kevin would still be alone. Sort of a double whammy. I have now read enough both here and in the medical texts to know that B-R may be able to live a long and happy life. I realize that cf will be a pain in the butt for us all, but I am not nearly so scared as I was a week ago. All of your postings have been a big help to me. I do agree that there should be a forum for, as we say in the world of autism: "newly diagnosed parents", (as if it is the parents that have the disorder! Ha!) I do really appreciate reading all of the upbeat and positive things you all have to say though. Thank You.

Marie

( I also want you to know that as one person said, we are so wrapped up in our new situation that I didn't even consider how my postings affected anyone else. I apologize if I have offended anyone!)
 
K

kybert

New member
why on earth would it be insulting? it doesnt bother me at all. finding out there is something wrong with your child IS devastating. there is no other word to describe it. i also dont think we have the right to imply to someone that just because we have lived past the age of 21 that thier child will do the same. its misleading, every case is different.
 
A

anonymous

New member
As a mother of a cf child, I have to say that it is devastating to find out that your child has a disease, fatal or not. I can't say that it isn't hard for those of you with CF to understand; I only ask that you try to put yourself in our shoes (as we should do as well). Imagine having a child (those of you with CF) and finding out that your child has cancer, MD, CP, etc. How would you feel? I think you would feel different than those who already have the disease....with everything new comes new feelings. I would also ask you to talk to your parents about how they felt about your diagnosis...you may learn something from them. I know I will be honest with my daughter, no matter how hard the discussion may be. Anyway, sorry for rambling, and I hope no one takes this as negative because it isn't meant to be. <img src="i/expressions/rose.gif" border="0">
 
E

Emily65Roses

New member
For Marie and new parents:
Really it's not insulting to me. I just try to imagine a future child of mine being diagnosed with something as life-altering as CF. I have no idea how that must feel. At least for me, it's all I've ever known. It was a brand new life-changing situation for all the parents. I have no idea how hard it must be for you guys. And really, don't worry about offending us. Unless you say something outright like "all CFers should be euthanized" I doubt you'll offend the majority of us. Some people are easily offended, but you can't please everyone. Trust me, I offend people here all the time, even though it's usually unintentional. Heh. Don't worry about it. And I like your daughter's name. Bonnie<img src="i/expressions/rose.gif" border="0">
 
M

Mockingbird

New member
Uh, yeah, let me repeat, I'm not insulted by it. It's just an awkward type feeling. Jenny and Luke you seemed to missed that. My heart goes out to the parents, too. I'm just saying it's a little awkward for me. (Why do you guys misread my posts so much?)

Marie, don't worry, i didn't post this 'cause I was offended. in fact, I don't think I even saw your post. =-) And I'm not balming you or anyone else for getting carried away about it. I was just mentioning how it kind of puts me (and I guess a lot of other cfers =-) in a weird place, is all. =-) If you still wanna talk, my e-mail is on my profile.... That weird red thing in the upper right corner with a magnifying glass. =-) I'm too lazy to pst my address, but I just realizedexplaining where my profile was kinda defeated the purpose. oh well.

Jarod
22 w/cf
 
S

serendipity730

New member
I like when new parents come to the board. I like to think that in some small way we can help them and their new tiny CFers. I'm not a parent, but when I even try to imagine what it might have been like for my parents when I was diagnosed, it makes me very sad. I think we need to try to be understanding of these parents.
 
J

jenhum

New member
Hey Jarod-
I was referring more to the posts that said stuff like

<blockquote>Quote<br><hr>I am getting a little tired of all the posts about the "absolute devastation"! <hr></blockquote>

and

<blockquote>Quote<br><hr> I know that it must be hard, but to me it's a little insulting to us.<hr></blockquote>

Not trying to pick on anyone, that's just who I mainly disagreed with.
I completely understood your post and I know what you mean about the akwardness.
 
C

CheerColl

New member
Well, Jenny, I didn't even think you were refferring to me until you copied my writing as an example.

I thought I was being a bit understanding of both sides, but comments like those are difficult, because I do not see my life as an "absolute devastation".

To the contrary, I see my life as a huge success, and I have overcome many boundaries and obstacles.

I see in my mother's eyes how hard it is for her to watch me go through this. Particularly at my hardest times. It hurts me so bad inside to see the pain and tears in her eyes. I was to curl her up in my arms, and tell her everything will be OK. I want to be the one comforting her, not the other way around. I wish there were more outlets available for her when I was born.

I want to stress now (since I was not clear in my other post) that I certainly DO want these parents to feel comfort by coming to this site. But, as suggested above, it may be more helpful both for them and for us if there was a catagory for "Parents of Newly Diagnosed".
 
E

EmilysMom

New member
I have to agree with Colleen here (Administrator???) maybe there should be a new category for "Parents of Newly Diagnosed". They can go there for support from other parents without driving everyone else crazy maybe.
Having lived with CF as part of our lives for 21 years, it has become everyday for us and we are used to it, but for a parent new to it, it can be devastating. If I try to remember the day Emily was diagnosed (2 days of age), it really is kind of a blur, because I freaked out when they took her away and they gave me so many drugs to calm me down that I lost a day and a half. I know you guys live with CF, but as a parent, from a totally different perspective, being told your child is "ill" is very devastating. You learn to live with it after a while, but new parents need time to do that. ;o)
 
J

jenhum

New member
Coll- I really wasn't trying to pick on anyone, that just happened to be a statement that I disagreed with you on. Even though I don't think any of us consider our lives to be a complete devastation, don't you think that's the phrase you would use to express your feelings about finding out tha tyour child had a life-threatening illness? I know I would....

I think my point was that b/c we're living it, we are able to show how successful our lives are and make these new parents understand that they shouldn't feel devastated b/c things can turn out ok.

So anyway, sorry if I offended anyone, that definitely wasn't my intent...<img src="i/expressions/face-icon-small-blush.gif" border="0">
 
A

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>jenhum</b></i><br> don't you think that's the phrase you would use to express your feelings about finding out tha tyour child had a life-threatening illness? I know I would....<img src="i/expressions/face-icon-small-blush.gif" border="0"><hr></blockquote>

I was just using the phrase about "complete devastation" because as I was trying to relate to Jarod's "akwardness", and that was just the first thing that came to mind. It is not like I can't comprehend that mothers/fathers use this phrase after finding their child was diagnosed. It is just one of the things that CAN BE "akward" to a 21 year old girl with CF who has no kids (i.e. me!).

Furthermore, COMPLETE DEVASTATION, I think would be the death of a baby. At least with the CF parents, they have their beautiful child, just a potetially difficult life and a lot of treatments and medications ahead. I think yes, of course this is a devastating disease and diagnosis to have to face, but as for complete devastation, no I don't think that is a phrase I would use.
 
You must log in or register to reply here.
Top