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what do you think?

J

Jade

Guest
I think a person would get psychological symptoms due to fears regarding the <u>outcome</u> of the problem and not really the problem itself. What I mean is that we sometimes fear what <i>could</i> happen when were left uninformed. Fears are easily quelled when we know what were up against. I agree, tell'em as early as possible<img src="i/expressions/face-icon-small-cool.gif" border="0">
 
J

Jade

Guest
I think a person would get psychological symptoms due to fears regarding the <u>outcome</u> of the problem and not really the problem itself. What I mean is that we sometimes fear what <i>could</i> happen when were left uninformed. Fears are easily quelled when we know what were up against. I agree, tell'em as early as possible<img src="i/expressions/face-icon-small-cool.gif" border="0">
 
M

MYBOY

New member
I totally agree with Christian and Allie. I have told my son that he has CF and explained it to him. I guess we don't dwell on the thought of dying early but he does know he might not live as long. We treat him like a normal kid - he doesn't like to take his enzymes and treatments in front of people - but that is his choice - not because we try to hide it. He just doesn't like people to ask - but at school he takes his enzymes in line - with no problems. I think if we talked about it ALL the time it would be hard on him (and all of us) mentally. I guess you just have to know what's best for your child - the job of us parents:)
 
M

MYBOY

New member
I totally agree with Christian and Allie. I have told my son that he has CF and explained it to him. I guess we don't dwell on the thought of dying early but he does know he might not live as long. We treat him like a normal kid - he doesn't like to take his enzymes and treatments in front of people - but that is his choice - not because we try to hide it. He just doesn't like people to ask - but at school he takes his enzymes in line - with no problems. I think if we talked about it ALL the time it would be hard on him (and all of us) mentally. I guess you just have to know what's best for your child - the job of us parents:)
 
M

MYBOY

New member
I totally agree with Christian and Allie. I have told my son that he has CF and explained it to him. I guess we don't dwell on the thought of dying early but he does know he might not live as long. We treat him like a normal kid - he doesn't like to take his enzymes and treatments in front of people - but that is his choice - not because we try to hide it. He just doesn't like people to ask - but at school he takes his enzymes in line - with no problems. I think if we talked about it ALL the time it would be hard on him (and all of us) mentally. I guess you just have to know what's best for your child - the job of us parents:)
 
E

Emeraldmirror

New member
I think it would be a lot more upsetting to know that your parents the ones who are supposed to take care of you, lied to you for years and years about a serious illness than it would be to find out right away.. the sooner you know the better, then you can get over the grieving period and on with your life.. I always knew i had cf i don't remember a time i didn't know... lying to your children about something that effects them is wrong.. i hated it when they would tell my parents things at the children's hospital but not me things just cause i was little... i wanted to know too.. you could explain it to me. some children could be much more devistated by the fact that you've been lying to them for years and years and years.. and can bring up some serious trust issues later on in life... your goal in life is to raise your children to be well rounded adults.. springing on them one day.. or having them accidently find out one day that they had a terminal illness is not a good way to go. I agree with allie lying to your children is wrong wrong wrong

Ashley 22 w/cf
 
E

Emeraldmirror

New member
I think it would be a lot more upsetting to know that your parents the ones who are supposed to take care of you, lied to you for years and years about a serious illness than it would be to find out right away.. the sooner you know the better, then you can get over the grieving period and on with your life.. I always knew i had cf i don't remember a time i didn't know... lying to your children about something that effects them is wrong.. i hated it when they would tell my parents things at the children's hospital but not me things just cause i was little... i wanted to know too.. you could explain it to me. some children could be much more devistated by the fact that you've been lying to them for years and years and years.. and can bring up some serious trust issues later on in life... your goal in life is to raise your children to be well rounded adults.. springing on them one day.. or having them accidently find out one day that they had a terminal illness is not a good way to go. I agree with allie lying to your children is wrong wrong wrong

Ashley 22 w/cf
 
E

Emeraldmirror

New member
I think it would be a lot more upsetting to know that your parents the ones who are supposed to take care of you, lied to you for years and years about a serious illness than it would be to find out right away.. the sooner you know the better, then you can get over the grieving period and on with your life.. I always knew i had cf i don't remember a time i didn't know... lying to your children about something that effects them is wrong.. i hated it when they would tell my parents things at the children's hospital but not me things just cause i was little... i wanted to know too.. you could explain it to me. some children could be much more devistated by the fact that you've been lying to them for years and years and years.. and can bring up some serious trust issues later on in life... your goal in life is to raise your children to be well rounded adults.. springing on them one day.. or having them accidently find out one day that they had a terminal illness is not a good way to go. I agree with allie lying to your children is wrong wrong wrong

Ashley 22 w/cf
 
K

kayleesgrandma

New member
Ok, I know I'm gonna get flamed, but I don't care.

I don't believe in telling a 5 yr old that "you have a disease that is going to kill you. We don't know how long you will live, but you are going to die." But that is just my opinion, and it is not right to make those that are in the camp of "not telling their kids everything" to be made to feel like bad parents.

I totally understand that kids need to be informed, and not find out by accident. But I do not feel right in saying to Kaylee's 8yr-old bro that Kaylee is going to die. I tell both of them that if Kaylee doesn't take her medicine, or do her vest, she will get very sick, and have to go into hospital. I think there is enough reality for children now, without being told you are going to die. I know my grandson, he is sensitive, this news would not be good now. I will have to tell him sometime, I know that. But childhood goes by so fast....I want them to have a little time to believe in Santa, the tooth fairy, and living. Reality is cruel, and I'm not ready to toss them out into it just yet. Why steal their childhood?

This is just my opinion folks, just speaking from the other side. I totally understand Allie's point of view, and if that is how she wants to raise her child, that's great. I don't think I'm being dishonest, just not telling the whole truth--(she says with fingers crossed behind her back!)
 
K

kayleesgrandma

New member
Ok, I know I'm gonna get flamed, but I don't care.

I don't believe in telling a 5 yr old that "you have a disease that is going to kill you. We don't know how long you will live, but you are going to die." But that is just my opinion, and it is not right to make those that are in the camp of "not telling their kids everything" to be made to feel like bad parents.

I totally understand that kids need to be informed, and not find out by accident. But I do not feel right in saying to Kaylee's 8yr-old bro that Kaylee is going to die. I tell both of them that if Kaylee doesn't take her medicine, or do her vest, she will get very sick, and have to go into hospital. I think there is enough reality for children now, without being told you are going to die. I know my grandson, he is sensitive, this news would not be good now. I will have to tell him sometime, I know that. But childhood goes by so fast....I want them to have a little time to believe in Santa, the tooth fairy, and living. Reality is cruel, and I'm not ready to toss them out into it just yet. Why steal their childhood?

This is just my opinion folks, just speaking from the other side. I totally understand Allie's point of view, and if that is how she wants to raise her child, that's great. I don't think I'm being dishonest, just not telling the whole truth--(she says with fingers crossed behind her back!)
 
K

kayleesgrandma

New member
Ok, I know I'm gonna get flamed, but I don't care.

I don't believe in telling a 5 yr old that "you have a disease that is going to kill you. We don't know how long you will live, but you are going to die." But that is just my opinion, and it is not right to make those that are in the camp of "not telling their kids everything" to be made to feel like bad parents.

I totally understand that kids need to be informed, and not find out by accident. But I do not feel right in saying to Kaylee's 8yr-old bro that Kaylee is going to die. I tell both of them that if Kaylee doesn't take her medicine, or do her vest, she will get very sick, and have to go into hospital. I think there is enough reality for children now, without being told you are going to die. I know my grandson, he is sensitive, this news would not be good now. I will have to tell him sometime, I know that. But childhood goes by so fast....I want them to have a little time to believe in Santa, the tooth fairy, and living. Reality is cruel, and I'm not ready to toss them out into it just yet. Why steal their childhood?

This is just my opinion folks, just speaking from the other side. I totally understand Allie's point of view, and if that is how she wants to raise her child, that's great. I don't think I'm being dishonest, just not telling the whole truth--(she says with fingers crossed behind her back!)
 
C

coltsfan715

New member
I am torn about this.

I think that it is important to know what is going on with your body. I think if it is a child then the child does not necessarily need to know ALL the details, but one of their care takers does need too. If the problem is known about it can taken care of or treated.

I would probably go crazy if I didn't know what was wrong with me ... not to mention I would probably be dead lol. I am hypersensitive to things with my body and I always know when there is a problem. If I did not have a diagnosis I would feel nuts - I would be going to docs all the time trying to figure out what is wrong with no luck.

I will add to that though by saying that I think that we don't need to know EVERYTHING that can happen with this disease. Some people like to know everything, but I have realized I don't. It is hard on me mentally to know every little bitty horrible terrifying detail of what may or may not happen to me with CF and CFRD. I have come to the conclusion that I am more than happy NOT knowing about possible problems right now - IF I develop new issues THEN I will pursue information about it. That may seem like a very "head in the sand" appriach to people, but it is what I need to do to not drive myself crazy with anxiety and depression so it will be done lol.

I think it comes down to each person needing something different. There is no right or wrong way with this topic. I personally was told I had CF and knew I had to take meds, but was not made aware of life expectancy or the possible severity of things until I was in my teens. I was fine with that because I would NOT have been able to handle all that info at 5 yrs old or even 10. To each his own and I try not to pass judgement for each person handling the situation differently.

Take Care,
Lindsey
 
C

coltsfan715

New member
I am torn about this.

I think that it is important to know what is going on with your body. I think if it is a child then the child does not necessarily need to know ALL the details, but one of their care takers does need too. If the problem is known about it can taken care of or treated.

I would probably go crazy if I didn't know what was wrong with me ... not to mention I would probably be dead lol. I am hypersensitive to things with my body and I always know when there is a problem. If I did not have a diagnosis I would feel nuts - I would be going to docs all the time trying to figure out what is wrong with no luck.

I will add to that though by saying that I think that we don't need to know EVERYTHING that can happen with this disease. Some people like to know everything, but I have realized I don't. It is hard on me mentally to know every little bitty horrible terrifying detail of what may or may not happen to me with CF and CFRD. I have come to the conclusion that I am more than happy NOT knowing about possible problems right now - IF I develop new issues THEN I will pursue information about it. That may seem like a very "head in the sand" appriach to people, but it is what I need to do to not drive myself crazy with anxiety and depression so it will be done lol.

I think it comes down to each person needing something different. There is no right or wrong way with this topic. I personally was told I had CF and knew I had to take meds, but was not made aware of life expectancy or the possible severity of things until I was in my teens. I was fine with that because I would NOT have been able to handle all that info at 5 yrs old or even 10. To each his own and I try not to pass judgement for each person handling the situation differently.

Take Care,
Lindsey
 
C

coltsfan715

New member
I am torn about this.

I think that it is important to know what is going on with your body. I think if it is a child then the child does not necessarily need to know ALL the details, but one of their care takers does need too. If the problem is known about it can taken care of or treated.

I would probably go crazy if I didn't know what was wrong with me ... not to mention I would probably be dead lol. I am hypersensitive to things with my body and I always know when there is a problem. If I did not have a diagnosis I would feel nuts - I would be going to docs all the time trying to figure out what is wrong with no luck.

I will add to that though by saying that I think that we don't need to know EVERYTHING that can happen with this disease. Some people like to know everything, but I have realized I don't. It is hard on me mentally to know every little bitty horrible terrifying detail of what may or may not happen to me with CF and CFRD. I have come to the conclusion that I am more than happy NOT knowing about possible problems right now - IF I develop new issues THEN I will pursue information about it. That may seem like a very "head in the sand" appriach to people, but it is what I need to do to not drive myself crazy with anxiety and depression so it will be done lol.

I think it comes down to each person needing something different. There is no right or wrong way with this topic. I personally was told I had CF and knew I had to take meds, but was not made aware of life expectancy or the possible severity of things until I was in my teens. I was fine with that because I would NOT have been able to handle all that info at 5 yrs old or even 10. To each his own and I try not to pass judgement for each person handling the situation differently.

Take Care,
Lindsey
 
M

MYBOY

New member
VERY well said Lindsey!! My son is 9 - he really didn't start asking about life expectancy til this year - I never lied - I did tell him the truth - BUT I didn't sit him down at the age of 4 or 5 and tell him he was going to die early. He has known all along that he had CF and he would have to do treatments and meds and see doctors alot. If he would have asked earlier I would have told him. I know that he would not have handled it the best when younger though! Heck - I think it would be hard to handle at any age!! (Brings tears to my eyes to think of how all of you could handle news like that!!) He really doesn't talk about it alot - but when he does I sit down and am open about anything he wants to talk about - He did talk about death alot for awhile after losing his grandma.

I do think it would be unfair to him to hide it from him til he was alot older though! They have enough to deal with in their teens. I guess everyone is different though!!
 
M

MYBOY

New member
VERY well said Lindsey!! My son is 9 - he really didn't start asking about life expectancy til this year - I never lied - I did tell him the truth - BUT I didn't sit him down at the age of 4 or 5 and tell him he was going to die early. He has known all along that he had CF and he would have to do treatments and meds and see doctors alot. If he would have asked earlier I would have told him. I know that he would not have handled it the best when younger though! Heck - I think it would be hard to handle at any age!! (Brings tears to my eyes to think of how all of you could handle news like that!!) He really doesn't talk about it alot - but when he does I sit down and am open about anything he wants to talk about - He did talk about death alot for awhile after losing his grandma.

I do think it would be unfair to him to hide it from him til he was alot older though! They have enough to deal with in their teens. I guess everyone is different though!!
 
M

MYBOY

New member
VERY well said Lindsey!! My son is 9 - he really didn't start asking about life expectancy til this year - I never lied - I did tell him the truth - BUT I didn't sit him down at the age of 4 or 5 and tell him he was going to die early. He has known all along that he had CF and he would have to do treatments and meds and see doctors alot. If he would have asked earlier I would have told him. I know that he would not have handled it the best when younger though! Heck - I think it would be hard to handle at any age!! (Brings tears to my eyes to think of how all of you could handle news like that!!) He really doesn't talk about it alot - but when he does I sit down and am open about anything he wants to talk about - He did talk about death alot for awhile after losing his grandma.

I do think it would be unfair to him to hide it from him til he was alot older though! They have enough to deal with in their teens. I guess everyone is different though!!
 
K

kayleesgrandma

New member
I would like to clarify, that I will ALWAYS answer Jaykub's or Kaylee's guestions as truthfully as I can. Both of the kids know Kaylee has a disease called CF, and that she has to take her meds and do the vest. I am just not going to give full details just yet. It will be my job to explain, as their mother has a hard time dealing with the whole thing of CF.

Linsey, you are so good at expressing yourself! You helped me feel better with my explanation.
 
K

kayleesgrandma

New member
I would like to clarify, that I will ALWAYS answer Jaykub's or Kaylee's guestions as truthfully as I can. Both of the kids know Kaylee has a disease called CF, and that she has to take her meds and do the vest. I am just not going to give full details just yet. It will be my job to explain, as their mother has a hard time dealing with the whole thing of CF.

Linsey, you are so good at expressing yourself! You helped me feel better with my explanation.
 
K

kayleesgrandma

New member
I would like to clarify, that I will ALWAYS answer Jaykub's or Kaylee's guestions as truthfully as I can. Both of the kids know Kaylee has a disease called CF, and that she has to take her meds and do the vest. I am just not going to give full details just yet. It will be my job to explain, as their mother has a hard time dealing with the whole thing of CF.

Linsey, you are so good at expressing yourself! You helped me feel better with my explanation.
 
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