stubborn daughter

[anonymous]

Hi all, I'm a mom of a 13 year old with cf. She is scheduled to go in Thurs. May 26 for a bronch. and PICC line. She talked her dr. into waiting until school was out to do it. He said we weren't in an emergency situation yet and thought she could wait 1 month. She had tried out for "Annie" at school and has 2 parts. She was very excited and didn't want to miss it. She also has a dance recital coming up this weekend. She has practiced for both to the point of exhaustion plus she wants to get perfect attendance for this 6 weeks of school. She never gets perfect attendance because of cf, as you might expect. she has set these goals and her father and I have tried to respect them. But I have now been up all night giving breathing treatments so hopefully she can sing tonight in "Annie". Sarah is so stubborn and doesn't let cf stand in her way of anything. Right now I think she is being stubborn to the point of being dangerous to herself. I'm going to call today and see if we can reschedule bronch. and home IV's. I'm sure she'll be furious but sometimes an adult has to take over and say enough. In the grand scheme of things, I hope she'll understand that not having perfect attendance is not as important as her health. We are willing to get through "Annie" and the recital because she has practiced so hard. We are so proud of her!

Thanks for listening, I have not posted often but do enjoy reading the posts and the website. I think this morning I just needed to "verbally vomit" and express my thoughts.

Samantha mom to:
Kayla, 14, Bipolar
and Sarah CF

 

[anonymous]

I know exactly what you are going through - my daughter is an 11 year old over achiever as well. She has perfect attendance for the whole year (this year). She got really sick right before Christmas Break but talked her doctor into waiting until her break from school before admitting her into the hospital. She said she would rather spend Christmas in the hospital than miss a day of school this year.

 

[wyatt22]

SHE'S A NORMAL TEEN SHE JUST HAS C.F. WHICH IS WHAT MIGHT MAKE IT HARDER.<img src="i/expressions/light.gif" border="0">

 

[buggygurl321]

Hi Samantha Boy can I relate. I have a 14daughter w/CF who is also an overachiever. Has managed to get high honors all three years in middle school except for one semester when a goofy teacher didn't give her the work to make up after she had been out for a clean out and she actually got her first b EVER. I agree. We want our children, CF or not, to be able to live their lives to the fullest and go for things and not have regrets but on the other hand, we cannot allow them to run themselves into the ground. I think we are very fortunate to have such stubborn kids on our hands....it is that strength that will help them fight the fights that may come up in the future. I can also relate as I noticed you signed that you have a child who's Bipolar, I have two with OCD, although only one is on meds for it. It is a rocky road we sometimes walk but it is pretty amazing the journey. Never the same day twice, huh?lol Have a wicked good weekend (Memorial day).

Gwen
Buggygurl's, Doodlebug's, and MeggyDoodles's Mom

 

[gretzky711]

As a survivor of the teen years I recall my recent times of being really stubborn. I was so addicted to hockey and got so good that I'm now playing in college. I found activities that would soak up my time because it made me forget I had CF. I set extremely high goals, like playing for a college team, because I wanted to show the world and others around me that nothing was gonna hold me back. It might have been viewed as stubborness by some, but I was just trying to be strong. It's a good mental attitude that helps me beat CF everyday. Don't discourage her. Remember, the bad things are always easier to believe. Let her do what she wants to do; I always got mad at my parents when they tried to undermine what I wanted to do. CFers tend to be more independent and stronger. Although stronger people are weaker because they aren't used to asking for help. Just reassure her that you support her and anytime she needs help you're there. It's really important that you tell her that face to face. I'd rather live fewer days and done what I wanted to do with my life than live longer and accomplished less of my goals. Just tell her that you're real concerned for her health before you call the doc.

Dave

 

[daisy]

Sarah went in Monday for bronch and PICC line. We were in the hospital for 3 days and are now home with IV treatments for 2 weeks. She made it through "Annie" and the dance recital. Watching her onstage at her dance recital showed me what a tough kid she is. I think your right, Dave, dancing makes her forget she has cf. When she is dancing, the look on her face says there's no one here except me in my own little world. We did go in 3 days early for treatment but she wouldn't have made it much longer. After her recital she even agreed. The principle at her school was great-even though she missed the last 4 days of school, he gave her perfect attendance anyway. It was only for 6 weeks but she was thrilled. Small gifts, right? Luckily we also have great drs. who were willing to let her do what she wanted to but were standing by just in case.

Yeah, Gwen it is never the same day twice around here either. Right now I have an unstable BPer because I have a CFer that needs me. Sometimes I wish there were 2 more of me, at least!

Dave, congratulations on attaining your goals. It is great to hear things from another viewpoint!

Samantha

 

[buggygurl321]

Samantha,
Do you have someone who can help out with some of the responsibilities? I know that this isn't always possible what with jobs, etc. however, maybe that can be helpful. Also, do you do anything to take good care of you? You sound like a wicked busy mom who could stand a little quiet time every now and then. My girls are all so close in age that since the beginning I would just line them up when they would be crying and I would evaluate who needed me most then deal. How old is your BPer? I am keeping you and Sarah in my thoughts. Take good care, Gwen

 

[anonymous]

Teens with CF tend to be nuts. That's what I've learned.

I am a 19 year old music education major in college with CF. During HS, I had absolutely ridiculous schedules that normal person should do. I had rehearsals every morning at 6:45 for the school's best jazz band that I was the lead soloist and saxophone section leader for 2 years, and a member for all four years of high school. I also did the all-too-geeky marching band where I was a soloist and section leader again. I also did countless other groups in and out of school (jazz combo, funk band, wind ensemble, chorus, etc.) In March I showed up at school at 6:45 and didn't leave most nights until 10 or 11 for play practice. I can't tell you how many times my parents didn't want me to go to certain evetns that I had to go to. I performed my junior year jazz state finals with pneumonia, and I went to a week of band camp with a PICC line in my damn arm. The fact of the matter is, I needed it. I needed to be like everyone else, and I needed to never let cystic fibrosis hold me back. It's bad enough this bitch is going to kill me one day, so I'm not going to sit by and take away what life I do have. My parents and I had one huge fight in my junior year (I forget what specifically...probably going to state finals with penumonia) and I actually cursed them out (I'm a very passive person) because they just had no idea who I was or what I was about if they were trying to let it beat me. There comes a time when the parents have to realize that no matter who is paying the bills or hose house the teen is living in, CF is their fight and their fight alone. As much as a parent wants to be there to be that defensive line, CF is largely an independent thing. The best that a parent can do in terms of CF at least, is be a friend (and keep the drugs comin'.) This isn't to say that you can't give your kid a good walloping for failing American History.

 

[IG]

I have to agree with the above poster.
There is only so much that you can do. You can either be child/teenager. Or you can be a cystic. I know this is vague but let me try to explain it better by giving you an example.

When I was in the hospital once, one of my favorite nurses had me for the day, she had just recently gotten back from a CF conference and was freaking out and lecturing me on my meds and treatments and all that stuff. I listened to her patiently and then quietly told her that if I lived my life by these drugs, these regulations, these treatments, then my life becomes the CF and I lose myself. I have to find the balance between my CF and my life. If that means missing a treatment to go to band practice, or even making an agreement with my doctor to wait a week to put me in the hospital because of a concert then so be it. But I have a life and am not totally ruled by CF. Do I work to control my CF yes, but I'm not controled by it. I'm not the "Cystic." I'm Candice, I play the flute and I have for the past 3 years, I'm an avid reader, I have tons of friends, I love history and I love traveling.

I understand health is important, it is, extremely so. But you have to realize that like I said before you have to balance out your life. Goals can be wonderful, I myself had my own goal of not missing any concerts. During my freshman and sophomore year in high school I met that goal. I begged, pleaded, and practically traded my soul to my doctor to not miss any of my concerts. I did extra home I.V.'s to stay out of the hospital, I did extra treatments, and yes I even put off hospital stays, but I made my goal. Which was a wonderful thing. Although I missed my Junior year, my following Senior year I didn't miss any of them. That stubborness brought me further than anything else I'd have to say honestly. Although there are points in life where you do have to realize that these things (e.g. hospital stays and I.V.'s) are not avoidable, hopefully your daughter can find a balance of them and realize when they're necessary and when they can be put off.

 

[daisy]

Gwen, Yes my husband is very helpful. I don't work a regular job but have 3 part time jobs so I can work or not. I try to take care of myself but sometimes get lost in the shuffle. The past 3 months have been rough though. My BPer is 14 and was in the hospital in March under suicide watch. Now she is pretty stable on meds. I feel torn sometimes between the 2. I am also afraid sometimes I let Sarah's health slide to deal with Kayla. I also homeschool so they are with me all day everyday. Our school system is awful so I pulled Kayla out last year and will start homeschooling Sarah this coming fall. She will be going to school some to help out teachers and to chorus.

I applaud all the cfer's for their strength and determination. But coming from a parents side, you hate to see your children suffer.

Samantha

 

[anonymous]

hi i have cf im 14 and when i needed a picc line and minor surgerie i acted like her and wanted too wait. i treated my body hard and when i went back in i had too get 6 more surgeries. so stuff she wants second stuff she needs first. so if you want to help her out get her that picc line.

 

[anonymous]

you have too stay strong for them or everything will crmble. Make sure they both know you love them. if she is thinking about suicide talk about it get her chat line numbers. but dont get mad it will only make her want to do it more. she probably just wants attention because you have to spend so much time with the one with cf. i know because i too have it and a older brother who is 15 im 14 so just try too help both talk when needed to but try and listen too everything they have have to say


Just for the record im a boy

 

[buggygurl321]

Samantha,
I applaud you for your strength. You are so right, no parent wants to see one of their children (or any child) suffer. Unfortunately, there is only so much we can do and so it is up to us to teach them to care for themselves as well. I am awfully glad to hear your BPer is stable. I know that OCD is not the same but I am sure that they both come with their trials. Just remember to breath, as it sounds as if your plate is so very full. If you ever want to email me directly, let me know and I will give you my email address. Take good care, you are all in my thoughts. Gwen