Emotional health question

[arabeth]

I am having a problem with my 9 year old daughter and wondered if anyone had any advice. She and her little sister (5) both have CF but other than that they do not know anyone else with it. I am beginning to see resentment in my older daughter and it's scaring me. I want to try to help her before it gets worse. I know she hates doing treatments but she pretty much does them without complaining anymore. She takes her enzymes without question and basically does everything I ask her to do...however, I have been noticing that she gets uncomfortable lately when I mention CF around other people. For instance, the other day she was getting her hair cut (she has a terrible time with her hair being unhealthy) and I told the stylist that she is on several medications and wondered if that had anything to do with it. Of course the stylist wanted to know why she is on meds and when I told her I got the look of death from my daughter. And the other night I was in her room talking to her and she told me she wants to lose weight...I darn near flipped! She is very healthy, a little short for her age but always in the 50%-75% for her weight...so quite good for CF...(my other daughter is skin and bones)...so anyway, I told her she did not need to lose weight and that she is perfect the way she is...she turned to me and said, "How can I be perfect when I have Cystic Fibrosis"...tears started flowing down both our faces and I didn't know what to say. I talked to her the best I could but I know I really can't relate to what she is feeling. I am really scared that this will only get worse as she gets older and I don't know how to help her. Any advice from people who have been there? Thanks very much for any help you can offer....


Worried Mom

 

[anonymous]

Renee,

My heart aches for you. It's so hard when our kids ask us questions that we have a hard time answering. My son has started asking a few questions that I didn't suspect so soon. I guess I've learned that I don't always have the answers.

A friend of mine (who has a 9 yr. old daughter w/CF) gave me some good advice once. She and her daughter had a couple of sessions with a family therapist and she said it was VERY helpful. I don't know if you have a good social worker at your clinic or not, but he/she may be able to provide you with some names or maybe even help you answer some of these questions your daughter is asking. Although my son is younger, I won't hesitate to utilize every resource I can when the questions become too tough. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately the field of psychology/therapy comes attached with a stigma. I think slowly, it is becoming more accepted, but it certainly can't hurt to talk with someone. I know that this has really helped me in the past. I wish you all the best. Hang in there, Renee!

Carey

 

[ButtonNO1]

HELLO MY NAME IS JO AND I AM 20 AND HAVE CF . MY MUM THOUGHT I RESENTED HER TO . BUT AS I EXPLAINED TO HER IT WAS NOT HER FAULT FOR MY ILLNESS IT CAN NOT REALLY BE HELPED . AT YOUR DAUGHTERS AGE I WAS OBLIVIOUS TO MY ILLNESS IT NEVER BOTHERED ME UNTIL I GOT HOLDER AND STARTED TO REALISE THAT I WAS ILL MY MUM ALWAYS TOLD ME WHEN I WAS YOUNGER BUT I DID NOT NO WOT IT WAS . YOU NEED TO SIT DOWN WITH YOUR DAUGHTER AND JUST LET HER KNOW THAT THERE IS NOTHING TO BE ASHAMED OR EMBRASSED IN ANYWAY WITH HAVING CF . AS FOR HER NOT KNOWING PEOPLE WITH CF WHY DONT THE TWO OF YOU SIT DOWN AND LOOK THROUGH THE WEBSITE TOGETHER AND SHE CAN SEE THAT THERE ARE LOADS OF PEOPLE THAT DEAL WITH THE SAME ILLNESS EVERY DAY IT COULD HELP HER UNDERSTAND A BIT MORE AS FOR HER WEIGHT I REALLY HOPE SHE KEEPS IT ALL ON AS THE MORE YOU WEIGH THE BETTER YOUR BODY WILL BE IF SHE GETS A CHEST INFECTION GOOD LUCK I HOPE THIS HELPED . BEST WISHES FROM JO IN UK
<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Renee,
I have a 9 year old daughter who does not have CF (I do), but I have really noticed this year, that it is oh so important to her to fit in, worry about what she's wearing, not being different, etc. She is really concerned about what her peers think of her too. I think this may be some of what your daughter is dealing with, not wanting to be singled out as different and just wanting to fit in.
I know I was very guarded about my CF. I never discussed it with any of my classmates all through school, which probably wasn't right, but that was just me. I didn't want to be known as "that girl w/ CF". I don't know who I was kidding. I grew up in a very small town & I'm sure everyone knew of my CF<img src="i/expressions/face-icon-small-confused.gif" border="0">

As far as the weight thing goes. I think there is such an unhealthy obsession w/ celebs, etc to be skinny (i.e. Mary Kate) that a lot of girls worry about that. Just keep reassuring her like you've been doing. It's so much better to have some extra weight if you get sick, but I'm sure that's hard for her to understand. I'm betting that she still is one of the skinniest kids in her class, you could assure her of that, and of course let her know that it's what is in the inside that matters.
Hang in there!

 

[Liza]

Hi Renee,
I have two teenage girls with CF, (17 & 14). I can feel that stare you daughter gave you at the hair dressers. That was a tough question to get around though. Me, I'd a never thought to ask about the different antibiotics effecting her hair. We, and maybe it's just us, have always thought that our daughters having CF was kind of private. Don't get me wrong, we didn't keep it a secret. All the family knew, as did our family friends, teachers, school, girl scout leaders and the like. Publicly though, like the hair dresser, no. We let our girls choose what friends to tell that they have CF. At their age, friends are always friends for a long time. Especially girls. They told their close friends, do their treatments in comfort in front of them, take their enzymes even to the point of keeping enzymes at their friends house so they didn't have to cart them around.
The feelings of wanting to lose weight. Did you ask her why she felt that way? My youngest mentioned it once. When I asked her why we got down to her not really feeling like she needed to but because other girls, her friends were talking about diets and not being able to eat this or that, or their mothers talking about them needing to go on a diet. I told her that she was at a great weight. She had good muscles, she was active and that with CF she needed to have a good weight just in case she were to get sick. That getting sick could cause her to lose weight quickly and that it was really hard to get it back on. To be happy that she would most likely never have to worry about how many calories she was eating, that they were too many, that she would get "fat". How comforting it should be knowing that she could eat popcorn with butter whenever she went to the movies, or have that milkshake from Dairy Queen, and eat however much pizza she wanted and not worry about it. What a pain it is having to worry about watching how much you eat and how envious the other girls might be. And then I added that so and so's mom was crazy if she thought that she needed to go on a diet because she was a growing girl and didn't need to limit her food intake as much as she had described. Seemed the friends mom was constantly on her about her weight, she weighed the same as my daughter only about an inch shorter.
Those feelings of being imperfect... I can't say how to handle that because I don't know what to say either. It's hard and we just don't know why we're dealt what we're dealt. Or why it happens or why some are healthier than others. And sometimes you just have to admit that we just don't know why. They are going to just tell you they wish they didn't have it. We wish it too. If we could take it away we would. But we can't, so we just live day by day.
Things will get easier and the not wanting to take the meds will most likely come at some point but we just have to hope that we taught them right and that they do what they know is right and take their meds and do their treatments and take in those 2400 or so calories a day. Hope I"ve helped in some way, if only to let you know you are not alone. j

Liza