Frustrated with friends and family

[lflatford]

Is anyone else out there frustrated with friends and family who have no idea what our childrens lives as CFers is like? Its not that they just don't know, because how could they know? But that they don't seem to want to know!! If I try to talk to loved ones about CF they back off and change the subject...this drives me crazy!! I just want them to listen and to ask how things are going occasionally. But it is like they would rather pretend nothings wrong. I swear that this forum and my husband are the only people I can depend on to understand, listen and care! I think people truly look at my daughter and think to themselves theres nothing wrong with her...look at her. Well, if they would learn about the disease they would see that is not true. I guess sometimes it just hurts because the people I am closest to have no idea what my little girl is going and will continue to go through.

Thanks for listening.

 

[ashton2005]

im with you on that one. we have family in illinois wich is grandma and grandpa on my husbnds side and they are the same way nd dont really understand it at all. i know it sounds bad but they have seen him 3 times and for all we know he may not be here when hes 2,3,or5 or hemay be here until he is 50 they jsut dont understand..


christi

 

[Jane]

Lynsey,
Your post was so timely!
You are so right about this forum.
I completely understand what you are saying about people not getting it. Even my mother has no idea what kinds of things my kids have to go through. Even though we try to explain and she sees the kids, she just doesn't get it. Yesterday she dropped by while both kids were doing nebs. One son was doing saline for the first time and was coughing and choking. Yes it was kind of stressful. Although she means well and wants to help our family through stressful times, she doesn't really understand and ends up getting angry that we're not letting her help. We had a big fight because she said I don't tell her how to help us. More stress!
In our house (with two cf kids), we have a routine established for setting up neb. treatments, g-tube feeds oral meds. etc. Its chaos sometimes but like all families, we do the best we can. It would be nice to have some help, but it is way more work to explain to someone what they can do to help than it is to do it ourselves. People don't understand how hard we work to maintain a "normal" family life for our kids.

Jane

 

[Jane]

Karen, that was awesome.

In my case, people were really supportive when my son was diagnosed, but it gets harder for them to understand and help with every day stuff.

I wonder if people have good ideas?

Thanks for sharing!

Jane

 

[Seana30]

I STILL have family members say....."maybe she will outgrow it."

Two days after Courtney was diagnosed my mother called me and said "you know Seana, people are having to walk on eggshells around you, you just need to deal with it." I was blown away!! It was the first and last time that I have ever screamed and cussed at my mother.

I finally told myself they would never understand, and hope they never have to.

That is why it is SO nice to have a place like this to come to.

I wish you the best Lynsey, and just always remember there are people here that understand what you are going through!!!

Take care

Seana

mom to

Lauren-15, no CF
Courtney-13, with CF
Cameron-10, no CF

 

[anonymous]

Karen - That letter was awesome - she is so lucky to have you and Troy their for them. I guess I am greatful that my son looks and acts normal and alot of people would never know anything is wrong with him. I think it's easier on him too. I have noticed lately that he doesn't like when I give him his enzymes in front of his friend - so I just sneak him to him now. But other than that we just try to treat him normal. - and I think he likes it that way. I guess we have never had the test run to see how severe his cf is. Is that something I should ask for?? I'm suprised I've never been offered other testing - as far as I remember he only had the sweat test.

Jane - I feel for you - hang in there!! I'm sure with g-tubes it's alot more work etc. I sure hope it gets easier for you and your boys. Somedays I want for another child - but I'm afraid to have another one with cf. I'm sure with 2 it's a real handful.

Mother of 9 yr old boy wcf

 

[anonymous]

The one person who drives me nuts is my mother. She lives quite a ways away and she visits about once a year. She's always been rather self centered, used the guilt card to get her way, and has pretty much lived a very sheltered protected life. DS having CF has just added to her martyrdom. I think in her bizarre fantasyland life, she sees herself as this brave woman with the terminally ill grandson. The grandson she rarely comes to visit and when she does all she wants to talk about is stuff she's seen on the internet about CF. She sees herself as an expert and has tons of advice to give about medications, treatments etc. I just wish she'd come visit and ENJOY her grandson for who he is -- get to know him instead of focusing on his disease.

Liza

 

[anonymous]

Thanks to everyone for your replies. Karen the letter is a great idea..I will try that. I don't want anyone's sympathy..I would just like to know that they understand...and maybe they will never. I have taken steps to get my family and friends involved in Great Strides this year...so hopefully the walk will bring us closer together.

 

[anonymous]

I always include plenty of information about cf and how it affects my children when I send out our Great Strides letter each year. It is an excellent way to educate everyone we know. I am not one to talk about cf among my friends. I think everyone has there own issues and would rather not be loaded down with others problems, especially when they can't fix any of our problems. It is not to say I don't mention cf, but I definitely don't go about how it is a drag. My family is more receptive to listen thankfully.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[LisaV]

Hi Lynsey,
What behavior exactly do you want your family to exhibit?
Just wondering because it would help making suggestions.

Do you just want them to listen to you so you have folks to share with and don't have to carry all of your concerns and such yourself?
Do you want them to change their behavior in some other way to you? If so, how?
Do you want them to change their behavior to your daughter? If so, how?


As family members we were supposed to not let on to the nieces with CF that they were any different than anany of the other kids or to say "out loud" that they had CF. (The parents wanted them, they said, to have "normal" lives.), Yet I also think their Mom wanted us to treat them differently than the other nieces and nephews For example, when they were young she wanted us to be there for every single one of their events like recitals and such (even to rescheduling our family events and even though they didn't reciprocate).

I never figured out how we could do both. We mostly treated them like they were normal kids and just took all of the "treatments" matter of factly and "in stride". (Except for the grandma, who kept saying "Poor _____. She has all of those sick kids" .....)

If I was your sister-in-Law. If Avery was my niece. What exactly would you want me to say or do?
Would love to know.
Maybe it could make be a better sister-in-law.

Thanks,
LisaV

 

[Jane]

Lisa V has a good point.

It made me think about what I would like for my boys from people near to us. To be honest, I'm not sure, but here are some beginning thoughts. It's very hard for parents because on one hand we want these kids to be normal and be treated that way. On the other hand, we want everyone to understand they are not normal because they have cf. Its such a mixed message, no wonder people don't know what to do. Things I want for my boys are different from things I want for myself.



What I want:

-them to live as normal a life as is possible.
-their disease to be understood by people close to them.
-their need for privacy in regards to their disease to be respected by friends and family.
-their short time with us to be honored and cherished.
-understanding and concern for their stress and the stress the disease puts on the family.
-people to have compassion for our situation.
-people who can recognize and anticipate what our daily emotional needs are without having to be told.
-people to be upbeat with a positive attitude.
-people to be there for us when we need them.


Just some thoughts.

Lisa, My kids have wonderful uncles and aunt. They are fun and funny and upbeat. They say the disease sucks, but they don't hover. They send me thoughtful cards. They visit when they can and when they can't they call. They listen to our stories and learn as much as they can. I told my sister-in-law about this site on Sunday and on Monday she emailed me to say she's hooked and wants to learn more.

I'm sure every family has special things that they can offer. Its hard to say what we need, on any given day it changes. Just be there for them when they need it.

Jane

 

[skh]

Boy, can I relate to this post. My daughter was diagnosed at the age of 11 (4yrs. ago) and my husband's family is very familiar with cf and my side was/is not. I was the person who took my daughter to her first cf appointment. That was so hard, I still tear up thinking about it. I have always been very close to Abby, she is my youngest child and we have always had a special bond.

My daughter has cf and I want her to lead as "normal" of a life as she can. I don't want people to pity her or look at her differently. And believe me, I have to remind myself not to do that also. It so hard for me to be tough with her when she gives me a hassle regarding her meds or treatments! I also don't want people to say "oh, poor Tim and Sue". I feel we are so blessed to have our three children and our lives are rich because of them.

But, (there's always a "but"!) it would be nice if they (my family especially) would atleast try to learn a little about cf and what my daughter faces on a daily basis. Not just the meds/treatments that she has to take each and every day but the realities that she has had to think about that most people take for granted. Or when it is brought to my attention that my siblings just don't think they can face a death of a neice so would I please do something about this?! Like I wouldn't eliminate cf from my daughter's life if I could?! Obviously that one bothered me since I am still thinking on it six months after it was said to me. I have considered the source and have forgiven that person but that doesn't take the pain away.

Now my mom is a totally different story. She is a rock for my daughter and myself. No, she doesn't "get" cf but she doesn't have too. She loves both of us and shows that to us in so many ways. She is a blessing to my family - I don't know what we will do when she is no longer here.

I too feel that this forum is the only place I can share. My husband and I do share and talk about it but I don't want to add to the weight on his shoulders either. And I don't discuss this with my two older daughters, maybe that's wrong to me but I always feel that I need to be there for them not the other way around.

Karen, your letter is great. I just may "borrow" it and send it to my siblings.

Well, thanks for letting me share. It's just nice to know there are people out there going through the same things.

Sue

 

[Beth]

Mom I wish that you would share more with Amand and me. I feel so out of the loop some times. It hurts sometimes that I have to find stuff out from someone other than you. I want to be there for you like you have been for me. Maybe that would help the both of us. I know it would on my end.


Beth

 

[Jennifer1981]

Hi,

My name is Jennifer 24 W/CF. My mother eventually lost all her friends due to my sister and I having CF. THEY DON'T GET IT AND NEVER WILL. Your son or daughter could be in the hospital or months, and they still won't get it. My mom use to cry mostly about me. She would try and confide in her friends as well as my dad. Her friends would listen for a while then change the subject. Eventually, I got less and less get well cards. Less phone calls. Then if they would see my mom in the supermaket or anywhere, they would quick turn around and run. All she had left was me, my dad, and sister.

When people ask, they usually don't care. They only ask to make it look good. They want to here "Everything is fine." THAT'S IT!!! Then a new subject. I lived my whole life saying that despite admissions, surgeries, school absences.

Also as a teen, I had NO friends. I still don't and don't really want any. They don't get it. Many times I wished I had a good friend but that is very hard to come by. Once you start going into the hospital, you are SO YESTERDAY. It really sucks!!!

Bottom line is people just don't get it. Many don't even care.

Jennifer 24 w/CF

 

[anonymous]

For the most part our families are pretty good. We want DS treated normally and have a routine down for his CPT treatments -- before breakfast, supper and bed, so they don't really interfere with other activities, preschool, etc. He gets his enzymes and the school sneaks in extra calories (butter, cream..), but that's the extent of anything being different. A friend of mine goes to her daughter's preschool every noon and does CPT, but I really don't want to draw attention to DS. DH and I actually are hoping that he'll just think that all the other kids go home and do the same thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> At family events, people end up gravitating toward wherever we're doing CPT. The kids 'cuz we're usually watching cartoons or movies on the dvd player. Older people cuz they keep us company and visit with us and they want to learn.

Problems arise for us when people don't think and come to a family event sick 'cuz they don't want to miss out. Or if someone lights up a cigarrete or cigar. Camp fires drive me BONKERS 'cuz DS is too young to know enough to keep away from the smoke.

And yes, I am concerned that DS is going to die young, so I would like the relatives on MY side of the family to get to know him. My sister has never ever come to visit. DS has never met his nieces and nephew and my parents visit once a year. They CHOSE to move far far away from the rest of the family and are constantly after us to come visit. Liza

 

[anonymous]

What I want:



-them to live as normal a life as is possible.

-their disease to be understood by people close to them.

-their need for privacy in regards to their disease to be respected by friends and family.

-their short time with us to be honored and cherished.

-understanding and concern for their stress and the stress the disease puts on the family.

-people to have compassion for our situation.

-people who can recognize and anticipate what our daily emotional needs are without having to be told.

-people to be upbeat with a positive attitude.

-people to be their for us when we need them.





Just some thoughts.



Lisa, My kids have wonderful uncles and aunt. They are fun and funny and upbeat. They say the disease sucks, but they don't hover. They send me thoughtful cards. They visit when they can and when they can't they call. They listen to our stories and learn as much as they can. I told my sister-in-law about this site on Sunday and on Monday she emailed me to say she's hooked and wants to learn more.



I'm sure every family has special things that they can offer. Its hard to say what we need, on any given day it changes. Just be there for them when they need it.



Jane</end quote></div>

Love love love this! Thanks, I am going to cut and paste it and save it forever. Isnt this what we all really need and want? WEll put!

Karen

 

[babyjaden2004]

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

Lisa V has a good point.



It made me think about what I would like for my boys from people near to us. To be honest, I'm not sure, but here are some beginning thoughts. It's very hard for parents because on one hand we want these kids to be normal and be treated that way. On the other hand, we want everyone to understand they are not normal because they have cf. Its such a mixed message, no wonder people don't know what to do. Things I want for my boys are different from things I want for myself.







What I want:



-them to live as normal a life as is possible.

-their disease to be understood by people close to them.

-their need for privacy in regards to their disease to be respected by friends and family.

-their short time with us to be honored and cherished.

-understanding and concern for their stress and the stress the disease puts on the family.

-people to have compassion for our situation.

-people who can recognize and anticipate what our daily emotional needs are without having to be told.

-people to be upbeat with a positive attitude.

-people to be their for us when we need them.













Jane</end quote></div>

Well said! Thank You. I am printing this out.

 

[Jane]

you guys, I just edited it since I misspelled their ooops

jane

 

[mom2brooke]

My family is the worlds worst. My grandmother and older members of the family hope she will just grow out of it. My mother and sister bring up cyctic fibrosis and bad stories, new treatments, etc. in front of our daughter and want to carry on a discussion. Also when she sits down to eat (especially in public) they are sure to make a big deal about her taking her enzymes even if we have already given them to her. My mother thrives off of attention, and the more attention she can draw to herself, the more people will pity her! Our daughter is 8 years old. The last thing I want her to get is the attitude that CF is going to kill me so why should I care? We have always treated her CF like we would any other illness such as diabetes telling her how important it is to take her meds, etc... What really makes me mad is when at family functions they will bring their sick kids with green snotty noses and not think anything about it! How can people be so insensitive. Sorry to vent, but it sure is nice to have some place to come to who understands what you are going through.

 

[anonymous]

My sister-in-law comes over for the "obligatory" holidays like Christmas, Easter, thanksgiving etc... and brings her sick kids. The kiddo's are constantly coughing and oozing green nastiness, though she claims it's just "allergies". She refuses to get her middle child tested for CF (she exhibits almost all of the symptoms of CF) and gets pissed off if we suggest it. My husband finally had to tell her not to come unless she has a Dr.'s note saying the kids are not contagious. It's kind of harsh but my son is worth it.