Hold on a second. I think people are reading this and walking away thinking that I called you all "Bad Parents". That is NOT what I said, or even meant to say. What I'm saying here are some suggestions, trying to give you thoughts for your mind.
Please don't come here and tell me "You are putting us Parents down! Don't judge us!". MY parents are in the same group as you are, I love them, and I applaud any CF patient's parents that actually care about them enough to try all they can for them...BUT...You do realize that by saying (and yes, I have read some of you parents on here blame your child's Brat trait on the CF itself) CF makes us brats and makes us think we're better than other kids, you put US down too, right??? It is definitely NOT the CF that makes your kids brats. People are a product of their environment, so obviously, it was something that you as a parent did with your child that made them think of themselves this way.
I'm not judging you, saying you are bad parents. What I hoped would happen is that some of you with your bratty CF children, would stop and think, "Wait, maybe this guy is on to something. Well, he as a CF patient has a pretty good outlook on life, and obviously he knew what he should do for himself at a young age...maybe I'll take some of this into consideration." This will benefit both you AND your child, you're doing it for them, not for yourself. It's about US CF patients and our turnouts. WE are the reason this site exists. Notice also, that most all of the actual CF patients here agree with me and really feel what I am saying, because they live it and they know what their parents DID do with them, or SHOULD'VE done with them. Your children too, are CF patients, they are one of US, and later in their lives they'll point things out that should've been different.
Even if you are one of the people that don't feel what I'm saying and think I might be a bad person, I hope the bad feelings don't last long at all. I want to be a friend to everyone on this board. Life is way too short to hold grudges. You forgive, don't forget, but ALWAYS forgive.
And I know, all of you are saying, "You're not a father, you don't know what it is to be a parent". Ok, I'm NOT a parent, and I most likely won't know the joy of having my own son/daughter like many of you already know. I have one nephew that my sister named after me. My siblings don't have CF, but they know everything I go through, and they know that I wasn't treated much different than they were. They know that I'm a good influence, I'm a well respected person, I have good manners for the most part, and I'm not going to say that I'm a good person, because they say that is a sin. (I don't mean to brag or anything, but it is what it is) Getting back to my nephew, he may be the closest thing to being a father as I ever will get, because none of us know how long we will last, especially having this illness. I like watching the little guy, he just started walking, he is learning and picking things up pretty fast. I protect him and look after him too because he is around here a lot. I'm watching him grow up. But at the same time, just for example, while he was learning to walk, sure we wanted to hold his hands and keep him away from things he could hit himself on, and we did. There's a difference in watching out for pointed things that he could injure himself on in any way as he falls, but if he is going to fall on his own in a wide open space, we went ahead and let him fall. His little mind is going to learn his limits of balance, movements he can and can not do. I realize having a child with CF is a little more serious than having a child in regular health, but same concept.
Karen (mneville), said "I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples."...and...."I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it." This is exactly what I am saying!! Good for you! I love that. If a parent were to show that they are sad, depressed, or mad about their kid having this illness, the child can't help but to feel the same way and to feel sorry for themselves. Back to square one, a child is a product of their environment. Yes, we as CF'ers will naturally be stubborn at times, it is because we want to show everyone, "Hey, we can do it too! Don't tell us we can't do that, because I just view it as a challenge." And that is alright, as long as WE know OUR limits.
...And to (Sakem), let me tell you something behind that apartment thing. During High School, I started to see my health declining. As soon as I graduated in 2004, only 3 days later actually, things got real serious. I was hospitalized for about 3 weeks and I was sent home in better health. I moved out to Texas for about 2 months to pursue other things in life. My health was still getting worse during this time, but I tried for myself. You can not help how fast this illness progresses in your body, you can only try to fight it off. Finally, it got so bad that I had to move back home, YES with my parents, and get on SSI, because I was so bad, that I couldn't even hold a job. When I had went out to Texas, I wasn't on SSI, so of course it was easier to get a place, just do it like everyone else! When I moved back home, I was in the hospital once every couple of weeks. I almost always had to continue meds at home for several more weeks. As soon as I was off, sometimes BEFORE I was even off of those meds, I'd be sick AGAIN. The cycle continued. Until I started reading up on this board (I started reading long before I even became a member), I didn't know what else I could do for myself besides do my meds at certain times and try to stay active. Thanks to people here, I found out about good supplements that no doubt have helped me stay out of the hospital for a good while now. But tell me..how could I NOT rely on my parents and SSI, if I couldn't even stay healthy enough time to find a job??? Because when I could still help my situation, I DID do things for myself. Just like a Senior citizen, sure they went out and had their lives on their own, had kids and whatnot. But now that they are older, maybe their health isn't what it used to be, so they are now living with their kids or in Senior homes, so they can be helped. They can't help it, just like I can't. I've been in alright health now for a few months, and I'm trying to build myself back up to a good level. I know I can do it, I don't want to rush out of the house and fall hard again before it's time to go like my first time. One day hopefully I'll leave again, I won't be able to thank my parents enough for letting me stay with them. So should I leave the house now?, without being in good enough health just yet to maintain a job AND my health, AND a place of my own, at the same time??? I'm staying here, just because I'm staying here doesn't mean they are doing everything for me. And be careful in pointing things out, I NEVER got personal and singled out a certain person and called them out on something. Maybe my CF was a little more accelerated than others', and I never got a chance to go on to do bigger things, but I can't help that can I??
Please don't come here and tell me "You are putting us Parents down! Don't judge us!". MY parents are in the same group as you are, I love them, and I applaud any CF patient's parents that actually care about them enough to try all they can for them...BUT...You do realize that by saying (and yes, I have read some of you parents on here blame your child's Brat trait on the CF itself) CF makes us brats and makes us think we're better than other kids, you put US down too, right??? It is definitely NOT the CF that makes your kids brats. People are a product of their environment, so obviously, it was something that you as a parent did with your child that made them think of themselves this way.
I'm not judging you, saying you are bad parents. What I hoped would happen is that some of you with your bratty CF children, would stop and think, "Wait, maybe this guy is on to something. Well, he as a CF patient has a pretty good outlook on life, and obviously he knew what he should do for himself at a young age...maybe I'll take some of this into consideration." This will benefit both you AND your child, you're doing it for them, not for yourself. It's about US CF patients and our turnouts. WE are the reason this site exists. Notice also, that most all of the actual CF patients here agree with me and really feel what I am saying, because they live it and they know what their parents DID do with them, or SHOULD'VE done with them. Your children too, are CF patients, they are one of US, and later in their lives they'll point things out that should've been different.
Even if you are one of the people that don't feel what I'm saying and think I might be a bad person, I hope the bad feelings don't last long at all. I want to be a friend to everyone on this board. Life is way too short to hold grudges. You forgive, don't forget, but ALWAYS forgive.
And I know, all of you are saying, "You're not a father, you don't know what it is to be a parent". Ok, I'm NOT a parent, and I most likely won't know the joy of having my own son/daughter like many of you already know. I have one nephew that my sister named after me. My siblings don't have CF, but they know everything I go through, and they know that I wasn't treated much different than they were. They know that I'm a good influence, I'm a well respected person, I have good manners for the most part, and I'm not going to say that I'm a good person, because they say that is a sin. (I don't mean to brag or anything, but it is what it is) Getting back to my nephew, he may be the closest thing to being a father as I ever will get, because none of us know how long we will last, especially having this illness. I like watching the little guy, he just started walking, he is learning and picking things up pretty fast. I protect him and look after him too because he is around here a lot. I'm watching him grow up. But at the same time, just for example, while he was learning to walk, sure we wanted to hold his hands and keep him away from things he could hit himself on, and we did. There's a difference in watching out for pointed things that he could injure himself on in any way as he falls, but if he is going to fall on his own in a wide open space, we went ahead and let him fall. His little mind is going to learn his limits of balance, movements he can and can not do. I realize having a child with CF is a little more serious than having a child in regular health, but same concept.
Karen (mneville), said "I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples."...and...."I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it." This is exactly what I am saying!! Good for you! I love that. If a parent were to show that they are sad, depressed, or mad about their kid having this illness, the child can't help but to feel the same way and to feel sorry for themselves. Back to square one, a child is a product of their environment. Yes, we as CF'ers will naturally be stubborn at times, it is because we want to show everyone, "Hey, we can do it too! Don't tell us we can't do that, because I just view it as a challenge." And that is alright, as long as WE know OUR limits.
...And to (Sakem), let me tell you something behind that apartment thing. During High School, I started to see my health declining. As soon as I graduated in 2004, only 3 days later actually, things got real serious. I was hospitalized for about 3 weeks and I was sent home in better health. I moved out to Texas for about 2 months to pursue other things in life. My health was still getting worse during this time, but I tried for myself. You can not help how fast this illness progresses in your body, you can only try to fight it off. Finally, it got so bad that I had to move back home, YES with my parents, and get on SSI, because I was so bad, that I couldn't even hold a job. When I had went out to Texas, I wasn't on SSI, so of course it was easier to get a place, just do it like everyone else! When I moved back home, I was in the hospital once every couple of weeks. I almost always had to continue meds at home for several more weeks. As soon as I was off, sometimes BEFORE I was even off of those meds, I'd be sick AGAIN. The cycle continued. Until I started reading up on this board (I started reading long before I even became a member), I didn't know what else I could do for myself besides do my meds at certain times and try to stay active. Thanks to people here, I found out about good supplements that no doubt have helped me stay out of the hospital for a good while now. But tell me..how could I NOT rely on my parents and SSI, if I couldn't even stay healthy enough time to find a job??? Because when I could still help my situation, I DID do things for myself. Just like a Senior citizen, sure they went out and had their lives on their own, had kids and whatnot. But now that they are older, maybe their health isn't what it used to be, so they are now living with their kids or in Senior homes, so they can be helped. They can't help it, just like I can't. I've been in alright health now for a few months, and I'm trying to build myself back up to a good level. I know I can do it, I don't want to rush out of the house and fall hard again before it's time to go like my first time. One day hopefully I'll leave again, I won't be able to thank my parents enough for letting me stay with them. So should I leave the house now?, without being in good enough health just yet to maintain a job AND my health, AND a place of my own, at the same time??? I'm staying here, just because I'm staying here doesn't mean they are doing everything for me. And be careful in pointing things out, I NEVER got personal and singled out a certain person and called them out on something. Maybe my CF was a little more accelerated than others', and I never got a chance to go on to do bigger things, but I can't help that can I??