I have been reading the posts on this sight for a few weeks now, and just wanted to say how wonderfully supportive and helpful everyone here is. I have a question of my own now. We have had one sweat test come back positive, and the doctor says he likes to do a conformation test, and that after it is confirmed we will schedule some time to go over some things. I feel so lost right now and half of the stuff that is mentioned on this sight I don't even know what it means or what it is. Will there be classes or will they give us literature to take home and learn from? How will we know what to do and when to do it? Up untill this point I have been so wrapped up in finding out how the results would come back that I never really thought about what we would do next. I feel like before I had my first child and I kept thinking how will I know how to do everything, who will teach me how to be a mom? Then the baby comes and you just know. Do you think it is like that? This seems so much different, much more technical and less natural. As worried as I am right now I still don't feel like this has all really sunk in yet. I think I just feel like I'm in business mode right now, like so much needs to be done I just have to do it, but at the end of the day none of this even seems real yet. Are there support groups? Do you find it harder to disipline your child once they are diagnosed? Should I let her around other kids, what if they are sick and I don't know it? Is this something that I should tell people that she will be around? I rarely leave her anywhere now as it is, but now can I ever leave her anywhere at all, and if I do should these people know? What about when she starts school, will her teacher need to know? Can she play sports when she gets a little older? Should we get rid of our dogs? I guess I really don't expect answeres to all of these questions, I just have so many things going through my head right now. I try to right them all down to ask the doctor, but this has consumed my entire life for the moment, it is all I can think about, I can't even sleep at night. My husband can't even talk about it at all yet, he says let's wait for the second test before we start worrying about things, but I know that he his just as worried as I am. The first test was done at a CF center which from reading here seems to be of upmost importance, and the repeat will also be done ther, I think by the other person who does them. I'm sorry if I sound a bit insane right now, I'm just so incredibly overwhelmed with so many emotions right now. Thanks for listening.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
what happens now?
- Thread starter anonymous
- Start date
AbsintheSorrow
New member
Okay, let's see. That's a lot of questions. First of all, any questions of a medical or technical nature, you can ask your doctor, they're very helpful usually. I don't imagine it's anything like being a mom when the baby is born and you just know. This is a lot more technical and a lot less natural, like you said. But any questions you have you can ask your doctor. And if you know specifics on what you want to ask (a certain med or therapy), you can always post again here. We tend to be very helpful. Heh. As far as disciplining, yes, discipline the same you would've otherwise. I was disciplined like any other kid, sometimes more so, and I never told my parents they should let me get away with murder because "they made me sick" or anything like that. Haha. As far as living her life once she gets older, let her. Don't hide her from other kids, or people in the public just because she's "abnormal" or sick. There's no point. I've said many times before, there's no point in hiding your kids from normal living just to let them live a little longer. Not to mention the most common infection CFers get, called pseudomonas lives in every healthy person and doesn't get them sick, and lives in showers, and is very prominent, so you can't keep them from getting it forever. Once CFers get pseudmonas, it's permanent. It can only be made dormant through antibiotics. And I have 3 or 4 strains, but I wouldn't go back and change anything because of it. Think quality, not quantity. As far as telling people, that's up to the individual. But I was brought up as a poster child, and everyone I know at all knows a lot about it, and I haven't been treated differently. I more often get treated differently by people that don't know what's going on, and just know I cough a lot, than people that actually know (because people that know, are usually more sensitive, and less likely to tell me to stop spreading SARS, heh). My teachers always knew when I was growing up, so I could go to the bathroom real fast if I needed, or so that they wouldn't ask me if I needed water every time I cough. Playing sports... that's going to be up to her. I always hated them, whether I could or not. And since I've gotten older, I haven't been able to. So if she wants to, and thinks she can, let her. Dogs... No point in getting rid of them. I've grown up around pets, and currently we have 5 dogs in the house. As long as she's not allergic, it won't make a difference. Also, from what I've heard... a sweat test cannot come back a false positive. So if you have a positive sweat test, the second test won't say anything different. You can get false negatives, but not false positives. Sorry to be the bubble-burster, but it's not as bad as it once was. For instance, when I was born in 1984, my parents were told I'd never graduate high school... nothing wrong with my brain, but I wasn't supposed to live to see 18. Now I'm a college sophomore, and those numbers and predictions can bite me! <img src="i/expressions/face-icon-small-happy.gif" border="0">Good luck with all this, and you can always come back and ask more. I might suggest signing up so you can leave posts with a specific name so we can identify you easier, especially now that you actually have a CF child. I post here a whole lot, so you'll see me. And one final note that I try to make to a lot of parents is that being extra uptight or protective will only drive the child entirely nuts. My parents were no more protective of me than other parents, or of my healthy sister. I drank as a teenager, still do sometimes. I smoked pot at parties when I was in high school, and stopped on my own when I realized it wasn't worth it. My mom knew almost the whole time I was smoking weed, but still had enough sense not to forbid it... it would've only made me want to more. And in the end, I realized on my own it wasn't worth it. One thing I truly hate when it comes to CF parents is parents who are more protective. Parents who are more protective over their sick children than over their healthy kids, or parents who are more protective than they would've been otherwise. It's not fair to your CFer child. Any kid is going to want to live a real life, with fun stuff, and friends. A CF child is going to want to even more once they understand because they've got (at least as of right now, as far as my life goes) about half the time healthy people have. So like I said... think quality instead of quantity. And feel free to continue asking. <img src="i/expressions/rose.gif" border="0">
Wow! Thank you for answering all of that for me, and who better to answer than someone who has been there. I have heard the same thing repeatedly about the positive sweat test, but still I just keep holding on to that last little bit of hope, I am trying to be prepared, but still holding out for some kinda of miracle. Maybe that is why I can't really let it sink in just yet. I still have something, no matter how small, to hold on to. That probally will only make things worse in the end, but no matter how I tell myself this is it, some small part of me keeps hanging on to that "confirmation test". I am only a couple of years older than you myself and I feel like this must be so hard for you to handle, and yet you seem so, I don't know, just completly in control of your life. It makes me feel so much better about my daughters future. I just want her to be able to see and experience some of the wonderful things has to offer, even though right now they are a little hard to see. Do you remember when you first really had a true understanding of what it meant to have cystic fibrosis? I hope that is not too personal of a question. I just wonder how will I tell her when she is older, and how do I tell my older child now? Do you remember if there is anything that helped you or made things easier to deal with? I won't blame you for not answering these questions if they are too personal. These are the questions I worry about the most, the ones that I can't find in a book, or ask a doctor who does not have a child with this. On a lighter note I'm glad to hear that we can keep our dogs, as she is not allergic. Thanks for your reply it was so helpful.
CalimomofKQ
New member
I remember those days all too well. My son is now 19 years old and has started a new job at a restauraunt in our city. He is so excited tonight! And my husband and I feel very blessed that he has transformed his life into one that has so much promise. It was only three months ago when he was on IV's (to fight another infection), he was battleing the "woe is me". The illness can really get him down at times, and us as well. One thing that has always been very beneficial has been getting hooked up with a CF care team at a good CF clinic at a regional hospital. They provide parent support group meetings every month. There, is were I would obtain valuable information from specialist in psychology, social work, CF care, well seasoned parents, The Cystic Fibrosis Foundation...the list goes on. It was one of these meetings recently where our son didn't want to attend and my husband and I almost physically made him go. He was not happy! After this meeting he felt so inspired by one of the young men on the panel (the topic was young adults w/CF and how they survived college, career planing, etc.) Our son has always lived his childhood or life doing everything a normal child does. Baseball, bodyboarding, and even high school football (don't recommed it- Hell week was way too hot and his body let him know it.) Never put physical limitations on these children. They need to be taught the "Can Do Attitude"! Remind them that their body will let them know when enough is enough. It is amazing how children self regulate some areas in their life. As for you and your husband, if this diagnosis is true, there will be some very sad moments trying to accept the brutal facts of this life shortening disease. I remember crying a lot, my husband as well, every time our boy would have a flare up. They go about life as a normal child, playing, laughing, crying mad! Then they get sick...up and down our emotions would go. Time softens the harsh news of a child diagnosed with CF. We still cry at times, even with our children sometimes (three boys age 21, 19CF, 16) It has taught us all so much, God is in the driver's seat, and we're here for the ride. Good luck and please let us know how things are going.
Augustmoon
New member
Wow, it seems like yesterday that I was where you are. Although it wasn't long ago (about 6 months ago) I've grown so much, learned so much, and met some outstanding people that this disease has brought us. My son is 9 months now (diagnosed at 3 1/2 months) and when I read your post, it was like looking at my past. No, it won't necessarily come naturally, but you'll learn fast and it just becomes a part of life. You'll be a pro in no time! Everyone has their span of time for when they come to grips with it...but you do and life goes on. It's a different life, but it does go on. I also have an older child (almost 4) who doesn't quite understand, but is starting to ask difficult questions that I can only TRY to answer as honestly as possible...I really don't know how else to answer. I've "heard" that husbands and wives take this news differently. From what I've gathered from MANY other mothers, dads just don't talk about it that much. My dad and my husband don't. And my poor dad...even after Ethan's second sweat test...STILL denied it. We've learned everyone copes in a different way. I know the hope you still hold. It's absolutely fine to hold on to that hope. Any human being would. Heck, I even held on to hope for some miracle on the gene test (after the second sweat test came back positive). Before we received the results on the second sweat test, I still had hope, but my heart prepared me for what I already knew. Now, I hold hope for a wonderful life for my son...for better and better treatments...and, yes, for a cure. I've been blessed with the best staff anyone could ask for at our CF Center (Riley Hospital for Children). They treat us as family and that's the best gift a parent of a CF child could ask for. We do have a support group (Parent's Night Out) and I believe that networking with other parent's really is the best therapy. Only we know what the other is going through. As for sports, I've been told by numerous doctors and nurses that sports/exercise is the best thing a CF patient could do for themselves (for their health...besides the obvious other everyday meds and CPT's). Our last "Parent's Night Out" was directly on this subject! This was one of my worries too! Another thing I've been told is that they need to lead as normal a life as possible. It will be really hard for me to "let go" when he's older (right now he doesn't know the paranoid mom I am...I was a paranoid mom before CF...you can imagine what it's done for me!!!) but I know it's best for him...and even for my daughter without CF. Every parent has their own way of doing things regarding this subject....I just use common sense. No interaction with sick people...no overly crowded places during cold/flu season...washing hands constantly...and I am extremely leary of restaurant high chairs and shopping carts. Now...this is just MY advice. Everyone does it differently, and there really isn't a right or wrong way...that I've found anyway. When other mom's and I discuss this topic, we've found each and every one of us are different. Sorry if I'm rambling...I'm really just trying to help and comfort you, because I know what I was going through at that time! Please feel free to email me if you'd like! augustmoon0003@aol.com or www.fightforethan.com (our website). I'll be praying for you!
AbsintheSorrow
New member
Those aren't questions you will find answers to in a book, haha. I don't know if there is a concrete answer... but I will tell you this : I don't even remember my parents telling me about the CF. I've known since before I can remember that I have it, and what it means. I've known since before I can remember that it's more likely than not going to kill me. I don't know how my parents told me, but that is something you can ask other parents haha. My mom is on here a lot (under the name EmilysMom lol), maybe she'll come by and see this. I'll point it out to her sometime and see if she can leave an answer for you. I mean I know what I think now when I think of what it truly means, but I can't remember a first time of thinking these things. And yes, I've lived a pretty spiffy life (though I am certainly not done yet!). I graduated high school in 2002, and though I'm half a year behind, I'm going to be a college sophomore in the fall. I'm going to a school that I love, pursuing a major that I love (American Sign Language), and I'm making Dean's List. My family is cool, as far as families go. I have a wonderful boyfriend. We have problems, of course, as we know no real couple doesn't. But he's been around longer than anyone else has now, and he knows everything about me. I can't think of a single thing he doesn't know. And he knows all the stuff that's in store for me, and for us, and he's still with me... on purpose. I can't have natural kids, (though not related to the CF... I had a hysterectomy when I was 18), and we want kids some day, so we've been thinking about ways to work around it. You didn't ask about this personal stuff, but I figure since you're wondering about your own daughter's future, I'd put in my two cents about the way I live. And actually, you said something about not wanting to ask stuff that's too personal, but as far as I'm concerned, you can ask me anything. Even the gross and / or personal stuff. Most people can ask me anything, especially related to the CF, but especially another person close to CF. A new CF parent, perhaps. I know you're asking because you want to know, not because you're a nosey snob. Hahaha. I don't always love my life, and there is stuff that I positively hate, of course. But overall, especially since I found my Mike, it's pretty good. I don't want to sugar coat stuff either though. I mean, I see a psychiatrist every few months, and I take antidepressants, have for a few years. That runs in my family, but it's also related to the "terminal illness" garbage. But that changes from person to person. And the other thing I always want to mention to new parents is that, my life is going to be pretty okay. Much shorter, sure, but pretty good, especially as long as I have people that love me around. But your daughter is born with CF in 2004. I was born with CF in 1984. Those are entirely different worlds. When I was born, they hadn't even specified what exact gene caused CF yet. That happened in 1989. Anyway, the main idea is that your daughter will have an entirely different life from mine, much better. If I had been born 20 years earlier than 84, I would've been dead far before I hit 20. So think of that the other way around and think, well if my daughter had been born 20 years ago, in 84, she probably wouldn't have lived past 30 or 40. She'll probably be around for a long time. <img src="i/expressions/rose.gif" border="0">
Augustmoon
New member
Emily, I have a question. Do you have any siblings? I want to thank you for all of your advice (I've seen you around here a lot) and you REALLY are helping a lot of us, especially those of us new to CF. You are also a great insight on how we should help our children cope (ie...quality vs. quantity). It's funny b/c I'm only a couple of years older than you, but with your knowledge and with how well spoken you are, you come off wiser than your years. Congratulations on all of your accomplishments and thank you! You're mom is a lucky lady!
Hi, my daughter was diangnosed when she was 2yrs 2months, and I remember feeling just like you. It is very overwhelming at first. Immediatly after the second test came back postive, we sat down with her doctor and felf much better. Take one day at a time. That's what we are still doing. We have 2 younger children who do not have CF. Our older daughter 6 is very happy and well adjusted. The treatments and medications get to be routine just like brushing your teeth. God never gives us more than we can handle. The most important thing with CF is to stay on top of the treatments, and to treat coughs and colds aggressivly. Good luck. Jennifer
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>I have been reading the posts on this sight for a few weeks now, and just wanted to say how wonderfully supportive and helpful everyone here is. I have a question of my own now. We have had one sweat test come back positive, and the doctor says he likes to do a conformation test, and that after it is confirmed we will schedule some time to go over some things. I feel so lost right now and half of the stuff that is mentioned on this sight I don't even know what it means or what it is. Will there be classes or will they give us literature to take home and learn from? How will we know what to do and when to do it? Up untill this point I have been so wrapped up in finding out how the results would come back that I never really thought about what we would do next. I feel like before I had my first child and I kept thinking how will I know how to do everything, who will teach me how to be a mom? Then the baby comes and you just know. Do you think it is like that? This seems so much different, much more technical and less natural. As worried as I am right now I still don't feel like this has all really sunk in yet. I think I just feel like I'm in business mode right now, like so much needs to be done I just have to do it, but at the end of the day none of this even seems real yet. Are there support groups? Do you find it harder to disipline your child once they are diagnosed? Should I let her around other kids, what if they are sick and I don't know it? Is this something that I should tell people that she will be around? I rarely leave her anywhere now as it is, but now can I ever leave her anywhere at all, and if I do should these people know? What about when she starts school, will her teacher need to know? Can she play sports when she gets a little older? Should we get rid of our dogs? I guess I really don't expect answeres to all of these questions, I just have so many things going through my head right now. I try to right them all down to ask the doctor, but this has consumed my entire life for the moment, it is all I can think about, I can't even sleep at night. My husband can't even talk about it at all yet, he says let's wait for the second test before we start worrying about things, but I know that he his just as worried as I am. The first test was done at a CF center which from reading here seems to be of upmost importance, and the repeat will also be done ther, I think by the other person who does them. I'm sorry if I sound a bit insane right now, I'm just so incredibly overwhelmed with so many emotions right now. Thanks for listening.<hr></blockquote>
AbsintheSorrow
New member
Yup, I have one sister, age 16. She doesn't even carry the gene for CF. So we got both extreme ends.
I just want you to know that there is a lot of hope. Just remember there are no guarantees in life, whether you have a disease like CF or not. I am a 34 year old woman with CF and did not really have many problems while growing up at all. My lung percentages are still at 96% predicted for the total lung capacity and have only had 2 sets of IV's ever. I do some of the maintenance meds and have been successful with them so far....so it's just like anything else, you do the best with whatever hand you are dealt....I am striving to live to be an old woman and when I was born my life expectancy was only like 20 or something like that. Having this disease really helps you to understand to live every day to the fullest and take advantage that you are here every day!<img src="i/expressions/face-icon-small-happy.gif" border="0">
Augustmoon
New member
To the last poster...BEAUTIFULLY PUT! <img src="i/expressions/rose.gif" border="0">
I have been away from the board for a few days and am just now catching up! WOW! I found several new moms looking to Emily for answers and, as always, Emily was there with the answers that I would have expected from her. She has grown into a remarkable young woman. I'd like to think her dad and I had something to do with that but alot of that is from living with CF. She has known about her CF from her third day of life when she was transferred to a new born intensive care unit for surgery for Meconium Ileus which started us on our CF journey. We have never hidden any CF facts from her or her sister because it didn't make sense to...they would both at some point need to know the real answers and it didn't make sense to put off telling them the truth about CF. We decided from the beginning that if her life was going to be shorter, it was going to be spectacular. Her doctor, Dr. Tom Dolan (of "Alex The Life of a Child" fame) told us that he always believed that CF kids were born cuter and smarter because they had shortened life spans. I think he was right!I'm rambling....feel free to ask questions!<img src="i/expressions/face-icon-small-happy.gif" border="0">
Hi again, thanks to every one for all of the wonderful advice. One of the biggest questions that I am struggling with right is how to exlpain this to my kids? My youngest( who has had the first test positive) is not really old enough to understand very much of this right now, although it won't be long I imagine since she is 3. We also have an older child who will also be tested, they say just to make sure, and even if her test is negitive( which we fully expect that it will be) I am really struggling with how to exlpain to her about her sister. Really not so much how to explain it but more how to deal with how she will take it. She is old enough to understand fully what it will mean, and she loves her sister very much and I just can't imagine how hard this will be for her to handle. This is by far the hardest thing that we have ever had to go through, and I feel so terrible because WE are really not the ones going through this it is my poor baby who is going through this and I feel so helpless because I know that no matter how diligent I am about her treatments and medications, no matter how much information I find on the internet, no matter how many questions I ask, and no matter which doctor we go to,when it comes right down to it there is nothing I can do for her, not really. This just doesn't seem fair, and I just keep thinking that maybe I will wake up from this nightmare soon, but I don't. On the bright side, my daughter is doing well and is just so tough, she is just as happy as ever, I wish we could all be so wonderfully nieve. I keep reading and everyone says that life goes on but at this point I just don't see how it can, I suppose that you have all felt that way at some point and are still here to tell us newcomers that life does go on, so it is somewhat comforting to know that maybe there will be a day when I can tell people what is going on with out completly loosing it, and maybe life will go on. I really do appreciate all of the advice here not only on my question, but on all of the questions on here. I am sorry to go on and on about things on here, but no one I know even knows the first thing about this, and I can't blame them, either did we untill very recently. Thanks again to everyone for all of you input.
Augustmoon
New member
To "what happens now" mom...please feel free to email me if you'd like to "talk". We are both new to this, both have two children around the same age (one with CF, one without), and have the same concerns. I, too, worry how my oldest (without CF) will deal with this. I also worry about the questions that will be asked by my youngest (with CF). My oldest (who is 4 going on 20) has already asked a few hard ones, but she's dealing with it better than I thought. I had always worried how I would answer her questions, but they kind of just come out. I don't lie to her, I just answer as best as I can to a 4 yr. old. Again, please email me if you want to talk. I've connected to several other moms, and it's been the best therapy I could ask for!!!! email: augustmoon0003@aol.com Take care!!!!!<img src="i/expressions/heart.gif" border="0">
NoDayButToday
New member
<blockquote>Quote<br><hr>I keep reading and everyone says that life goes on but at this point I just don't see how it can, I suppose that you have all felt that way at some point and are still here to tell us newcomers that life does go on, so it is somewhat comforting to know that maybe there will be a day when I can tell people what is going on with out completly loosing it, and maybe life will go on. <hr></blockquote>I myself cannot say how life starts to move again after the initial diagnosis, I was born with meconium ileus and thus have lived as a CFer my entire life. But I know, with each new, initially frightening thing CF throws my way, my mom and I pick up the pieces and move on. Almost 10 years ago I had my first hospitalization and I thought it was the end of the world. It was the first time my 6 year old self was REALLY aware of having CF. I was terrified, and I didn't even understand half the things going on. My mom explained everything to me as well as she could, but she herself was reeling as well. But then I was released. And after those two confusing weeks in the hospital, learning the ropes, life back in the real world was the same as always. We were OK. (Soon, I knew the ropes of the hospital VERY well and in fact, nurses loved having me assigned to them, since I dealt with little things like air in the IV tubing myself, instead of buzzing my nurse frantically <img src="i/expressions/face-icon-small-happy.gif" border="0">) Flash forward to 11 year old Coll. Home IVs for the first time. It was very scary, because even though I was very independent in the hospital, there was always a nurse to buzz if something went wrong. Those first nights were restless, for my mom and I. After a mishap or two (both much more scary looking than they really were <img src="i/expressions/face-icon-small-wink.gif" border="0">), we were old pros. A rather depressing thing to be an old pro in, but once again, the world started turning (yet another aside- I love home IVs now, it makes doing IVs infinitely easier). Then, just last month, I got a feeding tube (bard button), after months of hesitation. I decided, I'm 15; I'm not really a fan of looking 12 anymore. I thought it would be the biggest adjustment of my life. And it was pretty hard, the soreness was tough. Several late night yelling at my poor mother ("Its still sore MOM! Can you TRY to be careful putting the tube in!?"), it was just another part of my CF routine. It's nothing hard, I'm back in school, and like I said, life has started up again.One of my friends said recently to me, when I was bummed about my feeding tube, that "CF isn't the movie of your life Coll, it's more the commercials in between the scenes." Which isn't to say CF isn't a HUGE part of my life, it is, but it is in no way my whole life. I try to remember that when I have to put my world on pause to go into the hospital or stay home on IVs. Even though it seems at a total standstill at the moment, I promise you that life WILL go on. <img src="i/expressions/heart.gif" border="0">
Coll 15w/CF, read your post and I must say your story reminds me of my sons'. Every initial "new thing" when dealing with your disease does become the norm. Yeah, it is depressing at times but I know with Kevin (age 19) he looks forward to getting back to the "movie" of his life very much like you do. He never did like those darn commercials that always interrupted his shows. I just love the way you teenagers put things into perspective. A big "Well done" goes out to you and your mom! I remember how frightening the days were when the diagnosis was fresh.Time heals all things. Our families are very unique because of this disease, and no other person can understand how intense the dynamics can become within the household. My husband withdrew and didn't desire to go the Dr appts., now he is Kevin's personal assistant at those 5:00am infusions. Kevin's brothers all knew that he was different, in that he would visit the hospital, have more than the normal Dr. visits and cough & cough! They learned about what CF was about the age of 5 or 6. They asked and we told them that Kevin has "this disease that makes him very sick at times, " "but we can help him by reminding him to do his treatments." They really came to understand it more in High School Biology, where they use the model of the CF gene when studying genetics. They were happy or should I say sort of proud to mention that their brother had CF, & explain to the class what he goes through. It is pretty amazing the maturation that you children with CF gain in your years and the incredible affect you have on people.
The last sentance of the last post pretty much sums up what I was going to say. If there was one thing that I have noticed it is the incredible maturity that I have seen here from people so young. I guess you've had to grow up much faster than most kids, but I really admire how you guys are just like Yes I have this, it is part of me, but not all of me, and I'm not going to let it hold me back. Here I am a grown adult and I am acting like the world has just ended for us. Also what you said about your CF just being the commercials, that is one of the best things I've heard yet. I would have probally never thought about it like that. How amazing everyone here is!
All the time, growing up, people would ask how old Emily was, and my answer was always "4 going on 20" or "7 going on 20", etc. because she has always been so more beyond her years. Now that she is actually 20, she is going on 40...always has been more mature than most of her counterparts because of dealing with Cf for her her entire life. Hospitals, doctors, surgery, IVs, port-o-caths, PICC lines, meds, physical therapy..should I go on? I don't think I need to for all of those that have been there. For the new parents...hang in there.....you will see that CF is a manageable disease....although a frightening diagnosis! It will transform your lives in many ways but it will also bring new experiences that you would not otherwise have...like new CF friends! LOL <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Augustmoon
New member
I agree with Emily's mom. I have met the MOST AMAZING people that I never would have met had it not been for CF...and it's only been 6 months. Not that I wouldn't trade anything and everything for my son to be healthy, but it's amazing how CF has changed our lives...for the worse...and for the better. In some small way, I believe that we have been given a gift. Most people take life for granted thinking that there's always tomorrow. Not only is that not true for us...it's not true for ANYONE. So we have the gift of living life to it's fullest. Not just our children, but all of us. "When one door closes, another one opens"! Take Care!!!!!<img src="i/expressions/present.gif" border="0">