my child does have a good quality of life. And all people with cf are differant. I know a teacher here that has been sick all his life and is now in his 30's and just now been diagnosed w/cf. You might have never had pseudo or have had once. My friend was born with it. My daughter can not take the meds that fight it. she is allergic to them. My daughter has the best of both worlds she can go to school if she feels like it or stay at home with a home school teacher and not be counted against her or get behind on her studies. There are some mean teachers in the school systems and parents can not do anything about them if they are a vested teacher with the system. My son stayed all day with a terrible ear infection and the teacher did not call me. She kept telling him that maybe that he would get to feeling better after lunch. He didn't. I am not going to subject my daughter to a teacher that upfront tells me that she is going to alert me to my daughters needs and then just blow it off when I walk out the door. Last year we went for a indoor activitity, which ended up being outside. I had to be in a meeting with the principal. The teacher asked me about her going outside. My daughter is real prone for heat strokes. I told her that. I also told her that I brought a towel if they went out for her to make it slightly damp and put it around her neck. She said don't worry, I will watch her, she will be just fine. Needless to say I came back from my meeting and the teacher was in her room with some other teachers talking. I asked her where my daughter was and when I seen her she so sick. Other people are not going to care for your child like you are. They just do not care. They do not take the time to stop and think because it is not part of their daily thing. I am making my daughters quality of life the best that is possible. I would much rather her be at home, away from people that are not there for her best interest and see her feel good and enjoy life and be able to ride her bike in the summer and swim in her pool and play with her animals. Then spend time in the hospital with tubes in her stomach just so that we can run back and forth 2 hours both ways to the cf clinic just to find out if she gained half a pound. I think that is a much better quality of life than being sick. Who knows how long anyone of us has on this earth anyway. Anyone of us might have cancer or any life threathing illness that could take us out at any minute. But I feel as a parent you need to protect your children, and these are things that I know for a fact that would kill her quicker if I sent her into the lions den. Just because you made it to be 20 does not mean that you have done everything right or wrong. Your case of cf might be differant than that of my childs. We just lost a child here last week that was 8 years old to cf. That never got to do anything, because he stayed sick all the time and stayed in the hospital. Don't be so quick to lay judgement down on others for the way things are. Not everything works the same way for everybody. That what makes the world go around.
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SCARED SCARED OF SCHOOL
- Thread starter anonymous
- Start date
Emily65Roses
New member
I wasn't laying judgement, just giving you some food for thought. As far as my case goes, don't assume just because I'm 20 and go to school that all is well and dandy. I have 3 or 4 strains of pseudomonas that I grow on a regular basis now. Trust me, I know how all that business goes.
As far as your school system, it sounds like the best thing for your daughter is to be home. But that's not all the CF's fault. It sounds like your educational system sucks. The teachers and faculty at that school seem to be apathetic and useless (perhaps they should never have gone to school to become teachers). I don't doubt you're doing what's best for your child, especially after hearing about how often the teachers have ignored your warnings and preferences in regards to your daughter's care. I just wish you had a better school system. I grew up in a town with a fairly good school system. My mother always informed my teachers before the year even started (which I think you said you did too), but the difference in my case is that my teachers paid attention to it. All through my education teachers have been accepting of my "special needs" and have been cautious in making sure I got whatever extras I needed. I had a teacher who changed our "blue jeans for babies" one year into a "blue jeans for cystic fibrosis" on my account. Whatever my mom told my teachers that I needed, the teachers adhered to. Not to mention I had an excellent school nurse. She was my school nurse from kindergarten through 5th grade, and then when I got to the high school (9th grade), she had switched to CHS, so I had her again for 4 more years. She knew me real well, and I still visit her sometimes.
In this case, given the choices (or lack thereof), it sounds like your daughter is being best served by being at home. I just wish that your school system actually gave a damn about her health. I'm not doubting that she has fun and likes being at home. However, if she could be a "normal" child (like you said about your friend's son) and go to "regular" school while at the same time still having decent health (which would be possible if your terrible school system got some SERIOUS improvements), that would be a nice option to have. She's still young, but I imagine at somepoint she'll want to go to school with other kids (perhaps junior high, or high school... college)... So the one thing I might do if I were you is to present your case to the school board. Make sure to let them know how careless and harmful their teachers have been regarding your daughter. If the board of education knew, they might be willing to make some changes. And if not, they need to make some changes as well. I say, if they school board doesn't care either, go to your senators, or governer, or anyone above them. It's not right, and I would take measures to make sure changes are made. Go as high in the "system" as you need to until you get some satisfactory response. Public schools aren't the right way to go for everyone (my boyfriend's little brother is home schooled for entirely different reasons, and as of now it's the best path for him), but you should be able to have that option for your daughter if either she or you wishes. If you don't mind telling me, I'm quite curious, what state are you in that has such apathetic and ignorant educators? <img src="i/expressions/rose.gif" border="0">
As far as your school system, it sounds like the best thing for your daughter is to be home. But that's not all the CF's fault. It sounds like your educational system sucks. The teachers and faculty at that school seem to be apathetic and useless (perhaps they should never have gone to school to become teachers). I don't doubt you're doing what's best for your child, especially after hearing about how often the teachers have ignored your warnings and preferences in regards to your daughter's care. I just wish you had a better school system. I grew up in a town with a fairly good school system. My mother always informed my teachers before the year even started (which I think you said you did too), but the difference in my case is that my teachers paid attention to it. All through my education teachers have been accepting of my "special needs" and have been cautious in making sure I got whatever extras I needed. I had a teacher who changed our "blue jeans for babies" one year into a "blue jeans for cystic fibrosis" on my account. Whatever my mom told my teachers that I needed, the teachers adhered to. Not to mention I had an excellent school nurse. She was my school nurse from kindergarten through 5th grade, and then when I got to the high school (9th grade), she had switched to CHS, so I had her again for 4 more years. She knew me real well, and I still visit her sometimes.
In this case, given the choices (or lack thereof), it sounds like your daughter is being best served by being at home. I just wish that your school system actually gave a damn about her health. I'm not doubting that she has fun and likes being at home. However, if she could be a "normal" child (like you said about your friend's son) and go to "regular" school while at the same time still having decent health (which would be possible if your terrible school system got some SERIOUS improvements), that would be a nice option to have. She's still young, but I imagine at somepoint she'll want to go to school with other kids (perhaps junior high, or high school... college)... So the one thing I might do if I were you is to present your case to the school board. Make sure to let them know how careless and harmful their teachers have been regarding your daughter. If the board of education knew, they might be willing to make some changes. And if not, they need to make some changes as well. I say, if they school board doesn't care either, go to your senators, or governer, or anyone above them. It's not right, and I would take measures to make sure changes are made. Go as high in the "system" as you need to until you get some satisfactory response. Public schools aren't the right way to go for everyone (my boyfriend's little brother is home schooled for entirely different reasons, and as of now it's the best path for him), but you should be able to have that option for your daughter if either she or you wishes. If you don't mind telling me, I'm quite curious, what state are you in that has such apathetic and ignorant educators? <img src="i/expressions/rose.gif" border="0">
Emily's right about our town. Connecticut has great public schools, but our town in particular took really great care of her all the way through K-12. I contacted each of her teachers before school began every year and gave them a rundown on Emily's particular needs and told them who she had as a teacher the previous year so they could "chat". The principals at all the schools were wonderful and each teacher took excellent care of her for those years. Emily is right about your school system. It sounds as if there are teachers there that should be in some other profession...perhaps trash collection or politics!
I would be sure to let your school board know that your child's needs are not being met. The squeaky wheel does get the grease and who is a better advocate for your child than you? <img src="i/expressions/face-icon-small-blush.gif" border="0">)
I would be sure to let your school board know that your child's needs are not being met. The squeaky wheel does get the grease and who is a better advocate for your child than you? <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Emily65Roses
New member
And this is pretty unrelated, but to the anonymous post right after my mom... If your kids are home-schooled, there's really not a huge benefit to being hid from bullies and bad influences. Everyone has to meet these challenges someday and overcome them. If you don't meet bullies in school, you'll meet them in the "real world" among adults. Not to mention standing up the bullies and peer pressure makes you a stronger person.
Hi Heather ~
You don't have to send any child to school ~ it's your choice! Parents are responsible for their children! Those who send them to school make a decision to do so (altho' most aren't aware of this, because they're not told!).
There's a huge "homeschooling" network in the US ~ I believe now approaching 10% of all children. It was started by the eminent educationist and author John Holt in the 1960's (try doing a Search on "John Holt"). He began an organisation called "Growing Without Schooling". Now, there's the:
National Homeschooling Association, PO Box 327, Webster, NY14580-0327.
Tel: (513) 772-9580
I'm not in the US and I don't have a Web address, but there must be one! Again, Search.
This should arm you with all the information you need to make a choice. Whatever you choose, the very best of luck to you!
You don't have to send any child to school ~ it's your choice! Parents are responsible for their children! Those who send them to school make a decision to do so (altho' most aren't aware of this, because they're not told!).
There's a huge "homeschooling" network in the US ~ I believe now approaching 10% of all children. It was started by the eminent educationist and author John Holt in the 1960's (try doing a Search on "John Holt"). He began an organisation called "Growing Without Schooling". Now, there's the:
National Homeschooling Association, PO Box 327, Webster, NY14580-0327.
Tel: (513) 772-9580
I'm not in the US and I don't have a Web address, but there must be one! Again, Search.
This should arm you with all the information you need to make a choice. Whatever you choose, the very best of luck to you!
My son started Kindergarten this year.. I was scared to death..I gave the teacher, the school nurse and the principal a pamphlet that my cf clinic had... CF in School.. Explains everything. I brought in a air purifier for the classroom and asked if he could use hand sanitizer in class.. Also, they let him take naps after lunch in the School nurses office, if he gets tired.. The school will work with you, So don't be afraid to ask..Also.. Make sure she takes her vitamins... ADEKS seems to help him stay healthy and wash hands often.
My doctor recommended to home school my son. I wasn't sure about it, because, I want him to lead as normal of a life as possible. Then my son got sick last month and was in the hospital for 2 weeks. He is still coughing alot so now I am reconsidering it. The school has offered home tutoring for him through the winter months.. So we may do that and then put him back in the spring. Check to see if your local school offers anything like that. This is a chronic condition.
I'm 17girl and did everything as normally as possible in that i went 2school at the age of 4 and im in my final year now. i get the flu shot every year. i've had my fair share of colds. i get chest infections quite a bit but when i was 4 2 the age of maybe 12 i only had maybe 10 infections.
i wouldn't stop ur girl going 2 school, its important that cf is only part of her life and not her life. I do not feel that i was over expossed to colds and they never did me serious damage in fact they built up my immune system. I think it's important that ur girl feel as normal 2 other kids as possible.
if you want advice email me rosiefitzer@yahoo.com, and label it cf
i wouldn't stop ur girl going 2 school, its important that cf is only part of her life and not her life. I do not feel that i was over expossed to colds and they never did me serious damage in fact they built up my immune system. I think it's important that ur girl feel as normal 2 other kids as possible.
if you want advice email me rosiefitzer@yahoo.com, and label it cf
hi, my name is Farzeen, Emily may i have your email address, i have a baby with CF, he is 11 months old and having 5 kg weight only, his birth weight is 2.5kg. so u can imagine how is he, according to doctor he is really sevior
waitng for ur reply at my email address
FarzeenOvais@yahoo.com
waitng for ur reply at my email address
FarzeenOvais@yahoo.com
Hi Emily,
I just started reading the postings here. You're quite an authority...and prolific author. This is good! My 17 year old daughter was diagnosed with CF last year. She doesn't have the digestive issues common among CF folks. But she does have a tremendous difficulty gaining weight and fighting germs. She did great over the summer - relatively low exposure time. Then she went back to school, got bombarded with germs and bullies as you call them. She was recovering somewhat, then went to Thailand in the first part of December. (I, too believe in quality over quantity.) They couldn't find a transformer sufficient to power her nebulizer, and she went 2 weeks without pulmozyme and albuterol. She has been home 3 weeks and is still suffering the effects.
I have been on her to eat, on her to exercise, on her to get back to school...she and I share some personality characteristics, but we are also very different. For instance, I'm a gung-ho, lead follow or get out of the way, you're not bleeding out of your eyes so you should be fine sort. She is very sensitive, and as a child - literally - limped on the leg that had a mosquito bite. We used to call her Sarah Heartburn. (Reference to Sarah Burnhart - but you might be too young. Your mom might relate.) Anyway, she's sensitive and has different needs than I. I'm a heart patient with limited aerobic stamina, so I get not being able to breathe. But my limitations seem to be nothing like hers.
It breaks my heart to be so helpless in the face of it. I honestly don't know what to do for her. Send her to school to "butch up" and build an immune system and learn how to deal with the bullies? ("Oh yea? Well you're ugly and your mother dresses you funny!") Or let her go on an alternative program of independent study where she only spends 2 days a week at school? I'm really torn. Seeing her doctors on Monday and will consult them. However, it's really up to my daughter. She needs to become motivated to intervene and take action on her own behalf. And she's not taking up the gauntlet.
Do you have any thoughts on how she might be sufficiently motivated to get proactive about her health? To learn to create a routine in which exercise is a part of her daily regimen? To seek out new treatments that may augment her current treatments and improve her quality of life? Right now, she's apathetic, depressed, sickly...it's hard to watch. You seem very together. I'd be interested in your thoughts. I think that a perspective from someone nearer her own age would be extremely helpful. I'd love for her to ope na dialogue with you, or even jump on the chat board, but she's reluctant to "talk to strangers."
I keep telling her that those "strangers" share her experience and might be a wealth of empathy, solace, information, encouragement...but no go. I'd be happy to talk off line about this, share my email address with you and hers if she agrees. I really need help.
Thanks,
Lisa
I just started reading the postings here. You're quite an authority...and prolific author. This is good! My 17 year old daughter was diagnosed with CF last year. She doesn't have the digestive issues common among CF folks. But she does have a tremendous difficulty gaining weight and fighting germs. She did great over the summer - relatively low exposure time. Then she went back to school, got bombarded with germs and bullies as you call them. She was recovering somewhat, then went to Thailand in the first part of December. (I, too believe in quality over quantity.) They couldn't find a transformer sufficient to power her nebulizer, and she went 2 weeks without pulmozyme and albuterol. She has been home 3 weeks and is still suffering the effects.
I have been on her to eat, on her to exercise, on her to get back to school...she and I share some personality characteristics, but we are also very different. For instance, I'm a gung-ho, lead follow or get out of the way, you're not bleeding out of your eyes so you should be fine sort. She is very sensitive, and as a child - literally - limped on the leg that had a mosquito bite. We used to call her Sarah Heartburn. (Reference to Sarah Burnhart - but you might be too young. Your mom might relate.) Anyway, she's sensitive and has different needs than I. I'm a heart patient with limited aerobic stamina, so I get not being able to breathe. But my limitations seem to be nothing like hers.
It breaks my heart to be so helpless in the face of it. I honestly don't know what to do for her. Send her to school to "butch up" and build an immune system and learn how to deal with the bullies? ("Oh yea? Well you're ugly and your mother dresses you funny!") Or let her go on an alternative program of independent study where she only spends 2 days a week at school? I'm really torn. Seeing her doctors on Monday and will consult them. However, it's really up to my daughter. She needs to become motivated to intervene and take action on her own behalf. And she's not taking up the gauntlet.
Do you have any thoughts on how she might be sufficiently motivated to get proactive about her health? To learn to create a routine in which exercise is a part of her daily regimen? To seek out new treatments that may augment her current treatments and improve her quality of life? Right now, she's apathetic, depressed, sickly...it's hard to watch. You seem very together. I'd be interested in your thoughts. I think that a perspective from someone nearer her own age would be extremely helpful. I'd love for her to ope na dialogue with you, or even jump on the chat board, but she's reluctant to "talk to strangers."
I keep telling her that those "strangers" share her experience and might be a wealth of empathy, solace, information, encouragement...but no go. I'd be happy to talk off line about this, share my email address with you and hers if she agrees. I really need help.
Thanks,
Lisa
Emily65Roses
New member
Okay let's see. Well I'm always reachable if she's willing to talk to a stranger. But if not... This is a hard area to give help on. I had years during high school where I didn't give any kind of damn about my health. I skipped meds, tried smoking weed (mostly at parties), I attempted suicide once almost 4 years ago, etc. As typical as it sounds, I think we all go through a "rebellion" or "testing our limits" phase. I don't know where exactly I started getting better. In the last few years, two big things helped me along, I suppose.
One was getting big back into the CF community. I was a poster child when I was much younger and then stopped going to functions around maybe 9 or 10. Just a year or two ago I started talking to CFers online all the time, constantly posting on the board, etc. I've decided to embrace this side of me, because whether or not I want it, I'm stuck with it. I've stated before, due to the person it has molded me into, I'm proud of my CF. My next tattoo is going to be the number 65, and then a rose (probably on my ankle).
Two was when I started dating my Mike. This will sound incredibly cliche and terribly cheesy, but he gave me a reason to want to live (oh man I'm in a teenage mush movie). Cliche or not, though, it's true. He now helps me keep up with my meds and if I don't do them I feel horrendously guilty. This is either because he outright guilt trips me, or because I know it hurts him when I skip them.
Not everyone can find someone in their life this very moment that will make them "want to live." And not everyone will gain as much as I have from being big into the CF community. It changes from one person to the next. My best advice is that she needs to find things to jump into feet first. A subject in school that she likes / is good at, a friend, a boyfriend / girlfriend, religion (if that's her thing), a hobby, music, writing, a sport or game or group, etc. Anything that makes her happy, that makes her see past the stuff that entirely sucks.
If you can convince her to try coming onto the board, or even just talking to one CFer at a time (you can start with me if you so choose), I imagine it may help a lot. Some people are very despondent and are ashamed or try to hide their CF, see reason to feel like less of a person because of it. In my personal opinion (this is also going to sound corny), it's something that makes you almost even "more" of a person. You grow up faster, deal with more, empathize easier and with more people, understand the world generally better than most your age (these are all generalizations, not everyone is the same). Most of the CFers I have met have outrageously fun personalities that far surpass the personalities of healthy people I know. We're bossy and bitchy and outgoing and stubborn. Despite those being overall obnoxious, those traits go hand in hand with the good ones, which we also often seem to have a lot of. I was never ashamed or hid my CF (especially because I grew up as a poster child), but only in the past year or two did I start embracing it as I have been. And really, it's helped me a lot to be on this board. I talk to several CFers via AIM on a regular basis now. We talk about CF stuff, as is rather predictable, but we also talk about "regular" issues: school, relationships, friends, etc. Even if we're just talking about "normal" stuff, it's almost always insightful to talk to a CFer because even in every day life situations, they seem to understand me better.
So I guess my wonderful words of wisdom (haaaah) boil down to: 1). Find something that she can occupy herself with that she enjoys. 2). See if maybe you can get her to at least talk to one CFer on an individual basis (which may lead to checking the forum as well in time). If she's willing to try talking to a CFer, by all means, pass along my IM or email or both. <img src="i/expressions/rose.gif" border="0">
I just posted this and then saw I missed a part... Dealing with bullies. This is a hard one, because it depends on a lot on the individual personality. Using myself as an example, I'm just a huge smartass. If someone says something to me (especially if it's to make fun of my coughing or anything regarding the CF), I quickly tell them I have a chronic lung disease. Usually they shut up pretty damn fast. Haha. When people make fun around Mike, he purposely uses the word "terminal" because it makes people really think twice before opening their mouth again. More sensitive people often have more trouble with this. For whatever reason (though I think the CF is a big part of it), I grew a fairly thick skin over the years, and can take a whole lot without batting an eye. There are some subjects that do hurt my feelings, but when it comes to being insulted based on the CF, I always start running my mouth (usually with obscenities... heh). If your daughter is particularly sensitive, there's not necessarily much I can do to help her let insults slide off her back. The only possible thing I could put forth to attempt to help with this would be to make it very clear that there is NO reason to be made fun of for CF. And if people do, they are ignorant, useless, crappy people that she doesn't need to bother with anyway. That's a tough subject, so that's all I have for ideas regarding it.
One was getting big back into the CF community. I was a poster child when I was much younger and then stopped going to functions around maybe 9 or 10. Just a year or two ago I started talking to CFers online all the time, constantly posting on the board, etc. I've decided to embrace this side of me, because whether or not I want it, I'm stuck with it. I've stated before, due to the person it has molded me into, I'm proud of my CF. My next tattoo is going to be the number 65, and then a rose (probably on my ankle).
Two was when I started dating my Mike. This will sound incredibly cliche and terribly cheesy, but he gave me a reason to want to live (oh man I'm in a teenage mush movie). Cliche or not, though, it's true. He now helps me keep up with my meds and if I don't do them I feel horrendously guilty. This is either because he outright guilt trips me, or because I know it hurts him when I skip them.
Not everyone can find someone in their life this very moment that will make them "want to live." And not everyone will gain as much as I have from being big into the CF community. It changes from one person to the next. My best advice is that she needs to find things to jump into feet first. A subject in school that she likes / is good at, a friend, a boyfriend / girlfriend, religion (if that's her thing), a hobby, music, writing, a sport or game or group, etc. Anything that makes her happy, that makes her see past the stuff that entirely sucks.
If you can convince her to try coming onto the board, or even just talking to one CFer at a time (you can start with me if you so choose), I imagine it may help a lot. Some people are very despondent and are ashamed or try to hide their CF, see reason to feel like less of a person because of it. In my personal opinion (this is also going to sound corny), it's something that makes you almost even "more" of a person. You grow up faster, deal with more, empathize easier and with more people, understand the world generally better than most your age (these are all generalizations, not everyone is the same). Most of the CFers I have met have outrageously fun personalities that far surpass the personalities of healthy people I know. We're bossy and bitchy and outgoing and stubborn. Despite those being overall obnoxious, those traits go hand in hand with the good ones, which we also often seem to have a lot of. I was never ashamed or hid my CF (especially because I grew up as a poster child), but only in the past year or two did I start embracing it as I have been. And really, it's helped me a lot to be on this board. I talk to several CFers via AIM on a regular basis now. We talk about CF stuff, as is rather predictable, but we also talk about "regular" issues: school, relationships, friends, etc. Even if we're just talking about "normal" stuff, it's almost always insightful to talk to a CFer because even in every day life situations, they seem to understand me better.
So I guess my wonderful words of wisdom (haaaah) boil down to: 1). Find something that she can occupy herself with that she enjoys. 2). See if maybe you can get her to at least talk to one CFer on an individual basis (which may lead to checking the forum as well in time). If she's willing to try talking to a CFer, by all means, pass along my IM or email or both. <img src="i/expressions/rose.gif" border="0">
I just posted this and then saw I missed a part... Dealing with bullies. This is a hard one, because it depends on a lot on the individual personality. Using myself as an example, I'm just a huge smartass. If someone says something to me (especially if it's to make fun of my coughing or anything regarding the CF), I quickly tell them I have a chronic lung disease. Usually they shut up pretty damn fast. Haha. When people make fun around Mike, he purposely uses the word "terminal" because it makes people really think twice before opening their mouth again. More sensitive people often have more trouble with this. For whatever reason (though I think the CF is a big part of it), I grew a fairly thick skin over the years, and can take a whole lot without batting an eye. There are some subjects that do hurt my feelings, but when it comes to being insulted based on the CF, I always start running my mouth (usually with obscenities... heh). If your daughter is particularly sensitive, there's not necessarily much I can do to help her let insults slide off her back. The only possible thing I could put forth to attempt to help with this would be to make it very clear that there is NO reason to be made fun of for CF. And if people do, they are ignorant, useless, crappy people that she doesn't need to bother with anyway. That's a tough subject, so that's all I have for ideas regarding it.
Thanks very much for your response. It's a big help. Mainly, it confirms things I already feel or know. It's just learning how to handle them. My daughter is sensitive, yes. But she is also a smartass and not afraid to stand up for herself. I think it may just get overwhelming at times.
We just got the diagnosis a year ago. Initially, she was pretty butch about it. She has a failry mild case so far, and was using that to bolster her initial denial. "Hey - I have a pretty mild case. I'll be fine. It doesn't really bother me." The beginning of this school year followed by the trip to Thailand brought the reality and its potential crashing down on her head. My feeling is that she is going through the "normal" stages of grief and loss: Denial, anger, depression, acceptance, etc. Right now, she seems to be depressed. She doesn't bathe daily. She sits in her room with the shades drawn watching TV, coccooning. I worry. Some days she shows signs of life, but they are less frequent than they were.
She has things she's interested in. We have horses and she likes to ride. But it's winter now, and it's not really possible. She likes to dance. She wants to learn how to play the guitar. We're looking at getting her into dance class or guitar lessons. But, even though she likes these things, there is no real enthusiasm behind anything. She has admitted to feeling hopeless.
I know this is a normal stage of processing such a heavy thing. I've gone through it myself for this and other things in my life. I'm hoping that things will turn around for her - and soon. But I know that right now what she probably needs most from me is acceptance and patience and encouragement. It's hard to know when to put my foot down and when not to. it's just plain tough. COmpletely different than having grown up with the disease.
I used to be a poster child myself, so I can relate to your experience. But this is like having a bomb dropped on you. Takes a while to process, no?
Anyway, I appreciate your input and your offer of assistance. It has helped me feel that what she's going through is not outside of the "normal" range of experience, that there is hope for her turning around, etc. I try to treat her like an average person without this particular issue, but it's hard sometimes. A learning process for us all, I suppose.
I'll pass along your comments and offer to chat. She might really dig having someone kind of reach out to her. Take some of the fear out. Anyway, good luck to you. I'm sure we'll be talking in the future. I'd also like to talk to your mom - pick her brain about how to handle certain things. I like to have a broad perspective so I can make intelligent choices.
take the best of care,
L
We just got the diagnosis a year ago. Initially, she was pretty butch about it. She has a failry mild case so far, and was using that to bolster her initial denial. "Hey - I have a pretty mild case. I'll be fine. It doesn't really bother me." The beginning of this school year followed by the trip to Thailand brought the reality and its potential crashing down on her head. My feeling is that she is going through the "normal" stages of grief and loss: Denial, anger, depression, acceptance, etc. Right now, she seems to be depressed. She doesn't bathe daily. She sits in her room with the shades drawn watching TV, coccooning. I worry. Some days she shows signs of life, but they are less frequent than they were.
She has things she's interested in. We have horses and she likes to ride. But it's winter now, and it's not really possible. She likes to dance. She wants to learn how to play the guitar. We're looking at getting her into dance class or guitar lessons. But, even though she likes these things, there is no real enthusiasm behind anything. She has admitted to feeling hopeless.
I know this is a normal stage of processing such a heavy thing. I've gone through it myself for this and other things in my life. I'm hoping that things will turn around for her - and soon. But I know that right now what she probably needs most from me is acceptance and patience and encouragement. It's hard to know when to put my foot down and when not to. it's just plain tough. COmpletely different than having grown up with the disease.
I used to be a poster child myself, so I can relate to your experience. But this is like having a bomb dropped on you. Takes a while to process, no?
Anyway, I appreciate your input and your offer of assistance. It has helped me feel that what she's going through is not outside of the "normal" range of experience, that there is hope for her turning around, etc. I try to treat her like an average person without this particular issue, but it's hard sometimes. A learning process for us all, I suppose.
I'll pass along your comments and offer to chat. She might really dig having someone kind of reach out to her. Take some of the fear out. Anyway, good luck to you. I'm sure we'll be talking in the future. I'd also like to talk to your mom - pick her brain about how to handle certain things. I like to have a broad perspective so I can make intelligent choices.
take the best of care,
L
Lisa,
I'm around whenever you want to talk. I'm here on the boards all the time or you can get me at barbarawiles420@yahoo.com
Feel free to get me even if it feels like a little question or comment. CF parents tend to stick together. We are a very tight community and it's nice to have that support system when you need it.
Barbara
I'm around whenever you want to talk. I'm here on the boards all the time or you can get me at barbarawiles420@yahoo.com
Feel free to get me even if it feels like a little question or comment. CF parents tend to stick together. We are a very tight community and it's nice to have that support system when you need it.
Barbara
NoDayButToday
New member
Lisa,
If your daughter wants, I'd be happy to chat with her too. Let me know if you want my AIM screenname
If your daughter wants, I'd be happy to chat with her too. Let me know if you want my AIM screenname
Emily65Roses
New member
Yeah Coll is a good one, she's one of the CFers I talk to on AIM regularly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
NoDayButToday
New member
Yep, we're pretty fun once you get to know us <img src="i/expressions/face-icon-small-smile.gif" border="0">