Parents w/CF and Talking to Kids

A

abloedel

New member
Hi All:

I'm just wondering how best talk to my daughter about her upcoming trip.

My daughter Emily is a very mature, yet VERY sensitive 16 year old. As many of you know, she recently won a scholarship to study in Japan for about 8 weeks this summer. She worries about me and really notices when I cough more, it's more productive sounding, etc. and generally knows when I'm "sick" and need to go on antibiotics. She had a terrible time dealing with my hospitalization in January.

Anyway, my question really is about how to best talk to her about IF something happens to me while she is Japan, she is EXACTLY where I want her to be and where she should be. I don't want my CF to prevent her from living her life in any way, but I haven't been feeling exactly "well" these days....

I want to be honest with her but I don't want her to not go due to worry either. Any suggestions on how to best talk to her about this? Also, the point of this trip is to learn the language and culture of Japan, so it is "suggested" by the program sponsors to have as little contact with her as possible during her trip.

Thanks - Amy 36 w/CF
 
A

anonymous

New member
I was in a reversed similar situation three years ago. I have cf and was (and still am) on a lung transplant list. My parents were to leave the country for two years (Peace Corps). I assured them I wanted them to live their life and they'd have my support while away. I also added jokingly if they DIDN'T go they'd probably be kicking themselves in two years b/c I'd still be around and just as healthy as when they left (which turned out to be true). They assured me if my health were to change quickly they'd be on the next plane. SO they did it and my wife and I actually visited them while they were there.

I can imagine phone contact could take someone out of their culture, but could letters be an alternative?

Regards,

Jason 30 w/cf
 
A

anonymous

New member
This may sound cowardly, but maybe not say anything except "I love you" when she leaves and then write a letter and give it to someone with the stipulation that your daughter only receives the letter upon her return if things did not go well for you while she was gone.
It's a tough place for you to be in. Because you don't want her to worry, but you don't want her to be clueless either.
I have a feeling that she will come back from her trip & find you in the very same shape that you were in when she left<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
Dear Anonymos,

Im a sudent from Hoover High School from Glendale CA, i have to do a project on Cystic fibrosis and interview someone who has the disorder. I have e-mailed many people in the past 2 weeks but i havent gotton any reply from any of them yet and my project is do in 6 days i would be very thankful if you answer some questions about your disorder.

1. What is your name?
2. How old were you when you got the disorder?
3. Does anyone else in your family have the disorder?
4. What is it like having this disorder?
5. What would you recommend to someone with cystic fibrosis?
6. How old are you now?
 
A

anonymous

New member
Anonymous doing a project, CF is genetic. you are born with it. A more appropriate question might be, HOW OLD WERE YOU WHEN YOU WERE DIAGNOSED WITH CF? and please don't call it a disorder. Refer to it as CF or Cystic Fibrosis, that's what it is.

As far as the other questions, i cannot answer because I do not have CF, but I can tell you that nobody in my husband's family (as far as we know) has/had CF. But, there is talk of a great, great uncle that died at a very young age from a respiratory condition-so maybe there is family history' it's kind of complicated.

Maybe you want to share with us a little of what you know about CF, and then maybe people will respond to your questions.

Julie (wife to Mark 24 w/CF)
 
N

NoDayButToday

New member
1. Coll
2. From sex- that is, when my PARENTS had it and the result was me.
3. Nope
4. Sorry, I haven't written my memoirs yet.
5. Again my memoirs aren't written yet.
6. 16


Do a bit more research before you post such vague questions. 'Getting' CF occurs at the same time for everyone with it FYI. Asking 'what is it like' is like me asking you, "What is it like to be alive?" It's a VERRRY complicated question.
 
A

anonymous

New member
Coll, you make me laugh! Are you sure you are only 16??? I think of you like 20+, then am brought back to reality on the occasion you post your age <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Julie
 
A

abloedel

New member
Jason - that must have been difficult for your parents to "leave" you, but great that they did! I'll keep my fingers crossed for you that your name gets called for your transplant!

Regarding my daughter's trip, the program sponsors have asked us to limit our contact to one 15 min phone call per week. I and my daughter have always known "something" was wrong with me, but were very surprised to find out recently it was CF. The last time I was hospitalized in January, she was "away" (at a speech tournament in another state). I asked my family not to tell her so she could focus on her matches, but then I took a turn for the worse and the told me they were going to put me on a vent, which thankfully they ended up NOT having to do, but it was at that point I had my family call my daughter while an Aunt was on the way to pick her up. She did not handle it well and was very angry that we didn't tell her I was in the hospital...so I know she's thinking about that in the back of her mind.

Long story short (well, not as short as it could be :) ), things were not looking good for me in January and I believe there were several times things were very "tentative"...I know Emily knows this. I just want her to know that she's doing EXACTLY what I want her to....living her life on her terms...if something were to happen, even if it's just yet another trip to the hospital, I don't want her to feel guilty in anyway.

Thanks for the advice/support and listening!

Amy
 
A

anonymous

New member
Hi Amy,
I am a 40 year year old cf patient with a 15 year old son, and I can completely relate to what your dilemma! My situation is a little different in that I have known I have cf his whole life, whereas your diagnosis sounds new to you and your family, which I imagine adds a LOT of stress. My advice would be to be honest and factual. I have found that it doesn't work to withold information from my son, he is very good at finding things out! Trust is important, he knows I am going to tell him what is going on and I think that helps to decrease his unnecessary worry. I am in the hospital on average once a year for IV antibiotics and he understands that it is important for me to do that to get better, but that I DO get better (usually!) Can you sit down with your daughter and explain to her that you understand she is anxious about your health, but that you want her to go and have a wonderful experience? Maybe give her your word that you will contact her if there is anything going on with you? Also, can you let the people running the program know you have a special situation and fill them in a little bit? I hope this helps, good luck to you, and let us know how it goes!

Kim
40w/cf
 
A

anonymous

New member
Amy,

Please let us know how this communication works out for you. We're thinking of you!

Even though they call it a "wait" list, I'm not waiting. I hope I can go 10 more years without needing a transplant! I don't know how hard it must be to learn of a diagnosis in adulthood. I do know how hard it is to watch my PFT's plummet though. I hope you can get your PFT's stabilized and feeling better with the help of doctors, family, friends, whoever and whatever it takes!

Best regards, Jason
 
B

buggygurl321

New member
1) Katie
2)Uh.....forever? But I was diagnosed when I was nine....<img src="i/expressions/face-icon-small-smile.gif" border="0">
3.)Possibly my great uncle....died a long time before CF was discovered....same symptoms though....
4.) Annoying sometimes...otherwise, I couldn't care less....don't really pay much attention to it other than when I take my meds
5.)Take your meds!....yeah.....and follow your gut instincts.....yep....<img src="i/expressions/face-icon-small-smile.gif" border="0">
6.) 14 years, 4 months, 22 days, 7 hours old!!! LOL
 
B

buggygurl321

New member
Hi Amy!
I'm a non-CFer with a daughter who is a CFer. All I can offer up is that no one knows what the future holds for any of us. If the CF is under "control" there's no guarantee that a wayward truck won't come flying around some corner....I guess what I mean to say is that nothing is for sure except for the right here and the right now and none of us should take that for granted (if we can help it). You sound like a great mom who really loves her girl. And I am sure your girl really loves you. That's the kind of love that allows us to let each other live our lives. You keep up your good work encouraging your daughter to live her life, watching her do so is what makes yours so fun <img src="i/expressions/face-icon-small-smile.gif" border="0">. Take good care and know you both are in my prayers.
Gwen (Buggygurls mom)
 
A

anonymous

New member
Dear Katie,

Thanx for answering me back so soon. You have been very helpful. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And Im sorry if I refered to CF as a disorder, it's just because my teacher said that it is a disorder and im sorry if I have hurt anyones feelings. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I really didnt mean to but thx for everyones help. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
G

gretzky711

New member
Amy-

I was curious as to what scholarship that was and where I could get info, because I would love a chance at an opportunity like that. I'm sure it's over now, but would like reference for next year.

Thanks,

Dave
 
A

anonymous

New member
Anonymous doing the project,

You can only learn in life by making mistakes and learning, nobody's perfect. Reading back on my post to you, I see that my closing might have been taken as a bit harsh and I did not mean for it to come out that way. I apologize for that.

I can't get my husband to come on this site, but questions 4 and 5 are very personal and can be in-depth (if you read some of the postings you can see that everybody's CF is different). Some people do daily nebulizer treatments (antibiotics to kill bacteria), some only need pills. My husband didn't start doing the nebulizer until he was 22, most kids who are born today start them as infants. Some people have really bad problems gaining/maintaining weight because of digestive issues, other's are fine. Some cough a lot, and bring up sputum (medical name for a big loogie) when they cough. Sometimes people cough so hard that they throw up. I know for a while my husband had that happen when he was trying to eat a lot (maybe too much) to gain weight. It affects everyone very differently so if you are interested in some more specifics, come back and ask or email me at division902@hotmail.com

Being that CF is genetic, all people are born with it, but many are not immediately diagnosed. My husband (Mark) was diagnosed at 18 months because of "failure to thrive", he was loosing weight, had a lot of chest infections, bronchitis, pneumonia (all lung related). They diagnosed him with a sweat test and it was very high. Back in 1982 when he was diagnosed, blood test for the CF mutation either didn't exist, or weren't perfected yet.

As far as question #5, I can answer that. He is 24 and will be 25 in October. .

I hope this helps you get some answers for your school assignment and that you get the proper information to present to your class. It is much appreciated that you came back and thanked someone for posting, we don't get that often on this site from "project" questions and that is why we get a little hostile sometimes. Please come back if you have more questions, or are interested in learning more.

Julie (wife to Mark 24 w/CF)
 
A

anonymous

New member
Dear Julie,

Thank you for your reply. I appreciate it very much. It will help with my project very much. I just have one more question to ask. If it's not too personal or an inconvenience, how hard is it to live and cope with a person who has CF? Thank you very much.

-Anonymous
 
B

buggygurl321

New member
Hey, anonymous, i don't care if CF's called a disorder. Isn't it? Don't sweat. <img src="i/expressions/face-icon-small-smile.gif" border="0">

By the way, Ashley....how can you tell which mushrooms are murderous?

LOL

Katie
 
You must log in or register to reply here.
Top