Pen Pals for CF Kids?

T

Terry

Guest
One of the hardest things besides being sick for CF kids must be that they can't be with each other due to fear of making each other sick.

Kids with cancer can get together, go to camps, etc.

But it seems that CF kids do it all on their own, unless they have a sibling with CF.

I have been thinking for sometime about trying to find a pen pal for my step-daughter. She is only turning 9 years old, and I wouldn't want her communicating in a forum, but it would be cool for her to have a friend that sends her mail, and she can send mail to. Someone who she could talk to who doesn't just say they understand, but really, truly understands. Someone who can send her a get well soon card, and she can do the same for. Someone who can let her know that they have the worst Mom in the world for making them do all their treatments everyday, lol. Maybe get me off the hook every now and then.

Might even help her Language Arts skills.

Have any of you ever done this, know where to go to find something like this?
 
T

Terry

Guest
One of the hardest things besides being sick for CF kids must be that they can't be with each other due to fear of making each other sick.

Kids with cancer can get together, go to camps, etc.

But it seems that CF kids do it all on their own, unless they have a sibling with CF.

I have been thinking for sometime about trying to find a pen pal for my step-daughter. She is only turning 9 years old, and I wouldn't want her communicating in a forum, but it would be cool for her to have a friend that sends her mail, and she can send mail to. Someone who she could talk to who doesn't just say they understand, but really, truly understands. Someone who can send her a get well soon card, and she can do the same for. Someone who can let her know that they have the worst Mom in the world for making them do all their treatments everyday, lol. Maybe get me off the hook every now and then.

Might even help her Language Arts skills.

Have any of you ever done this, know where to go to find something like this?
 
T

Terry

Guest
One of the hardest things besides being sick for CF kids must be that they can't be with each other due to fear of making each other sick.

Kids with cancer can get together, go to camps, etc.

But it seems that CF kids do it all on their own, unless they have a sibling with CF.

I have been thinking for sometime about trying to find a pen pal for my step-daughter. She is only turning 9 years old, and I wouldn't want her communicating in a forum, but it would be cool for her to have a friend that sends her mail, and she can send mail to. Someone who she could talk to who doesn't just say they understand, but really, truly understands. Someone who can send her a get well soon card, and she can do the same for. Someone who can let her know that they have the worst Mom in the world for making them do all their treatments everyday, lol. Maybe get me off the hook every now and then.

Might even help her Language Arts skills.

Have any of you ever done this, know where to go to find something like this?
 
T

Terry

Guest
One of the hardest things besides being sick for CF kids must be that they can't be with each other due to fear of making each other sick.

Kids with cancer can get together, go to camps, etc.

But it seems that CF kids do it all on their own, unless they have a sibling with CF.

I have been thinking for sometime about trying to find a pen pal for my step-daughter. She is only turning 9 years old, and I wouldn't want her communicating in a forum, but it would be cool for her to have a friend that sends her mail, and she can send mail to. Someone who she could talk to who doesn't just say they understand, but really, truly understands. Someone who can send her a get well soon card, and she can do the same for. Someone who can let her know that they have the worst Mom in the world for making them do all their treatments everyday, lol. Maybe get me off the hook every now and then.

Might even help her Language Arts skills.

Have any of you ever done this, know where to go to find something like this?
 
T

Terry

Guest
One of the hardest things besides being sick for CF kids must be that they can't be with each other due to fear of making each other sick.
<br />
<br />Kids with cancer can get together, go to camps, etc.
<br />
<br />But it seems that CF kids do it all on their own, unless they have a sibling with CF.
<br />
<br />I have been thinking for sometime about trying to find a pen pal for my step-daughter. She is only turning 9 years old, and I wouldn't want her communicating in a forum, but it would be cool for her to have a friend that sends her mail, and she can send mail to. Someone who she could talk to who doesn't just say they understand, but really, truly understands. Someone who can send her a get well soon card, and she can do the same for. Someone who can let her know that they have the worst Mom in the world for making them do all their treatments everyday, lol. Maybe get me off the hook every now and then.
<br />
<br />Might even help her Language Arts skills.
<br />
<br />Have any of you ever done this, know where to go to find something like this?
 
T

TonyaH

Guest
Hi Terry,
I had the same thoughts for my son about 3 months ago. Some very nice parents put us in touch with their children and Andrew was able to email a few of them. The problem was, Andrew did not keep up with the emails. He was very interested in talking to others, but was not willing to get on the computer everyday to write letters. He will once in a while send a note to someone, but I felt badly that he began communications with children and then did not keep up.

There are many of us in the same boat. We want our children to be able to communicate with others who understand them, but want it to be in a "controlled" environment while they are still learning all there is to know about CF. Andrew, for one, knows alot about the disease, how it affects his body, what all of his meds are for, etc, but does not understand the prognosis of CF.

I will pm you our email address. I cannot promise that Andrew will be a quick responder, but we can try!
 
T

TonyaH

Guest
Hi Terry,
I had the same thoughts for my son about 3 months ago. Some very nice parents put us in touch with their children and Andrew was able to email a few of them. The problem was, Andrew did not keep up with the emails. He was very interested in talking to others, but was not willing to get on the computer everyday to write letters. He will once in a while send a note to someone, but I felt badly that he began communications with children and then did not keep up.

There are many of us in the same boat. We want our children to be able to communicate with others who understand them, but want it to be in a "controlled" environment while they are still learning all there is to know about CF. Andrew, for one, knows alot about the disease, how it affects his body, what all of his meds are for, etc, but does not understand the prognosis of CF.

I will pm you our email address. I cannot promise that Andrew will be a quick responder, but we can try!
 
T

TonyaH

Guest
Hi Terry,
I had the same thoughts for my son about 3 months ago. Some very nice parents put us in touch with their children and Andrew was able to email a few of them. The problem was, Andrew did not keep up with the emails. He was very interested in talking to others, but was not willing to get on the computer everyday to write letters. He will once in a while send a note to someone, but I felt badly that he began communications with children and then did not keep up.

There are many of us in the same boat. We want our children to be able to communicate with others who understand them, but want it to be in a "controlled" environment while they are still learning all there is to know about CF. Andrew, for one, knows alot about the disease, how it affects his body, what all of his meds are for, etc, but does not understand the prognosis of CF.

I will pm you our email address. I cannot promise that Andrew will be a quick responder, but we can try!
 
T

TonyaH

Guest
Hi Terry,
I had the same thoughts for my son about 3 months ago. Some very nice parents put us in touch with their children and Andrew was able to email a few of them. The problem was, Andrew did not keep up with the emails. He was very interested in talking to others, but was not willing to get on the computer everyday to write letters. He will once in a while send a note to someone, but I felt badly that he began communications with children and then did not keep up.

There are many of us in the same boat. We want our children to be able to communicate with others who understand them, but want it to be in a "controlled" environment while they are still learning all there is to know about CF. Andrew, for one, knows alot about the disease, how it affects his body, what all of his meds are for, etc, but does not understand the prognosis of CF.

I will pm you our email address. I cannot promise that Andrew will be a quick responder, but we can try!
 
T

TonyaH

Guest
Hi Terry,
<br />I had the same thoughts for my son about 3 months ago. Some very nice parents put us in touch with their children and Andrew was able to email a few of them. The problem was, Andrew did not keep up with the emails. He was very interested in talking to others, but was not willing to get on the computer everyday to write letters. He will once in a while send a note to someone, but I felt badly that he began communications with children and then did not keep up.
<br />
<br />There are many of us in the same boat. We want our children to be able to communicate with others who understand them, but want it to be in a "controlled" environment while they are still learning all there is to know about CF. Andrew, for one, knows alot about the disease, how it affects his body, what all of his meds are for, etc, but does not understand the prognosis of CF.
<br />
<br />I will pm you our email address. I cannot promise that Andrew will be a quick responder, but we can try!
 
T

Terry

Guest
Thanks Tonya!

I know what you mean about "controlled" environment. That is the issue we have as well. Marissa knows the same as your son. She knows nothing of the "prognosis." We know that sooner or later someone will say something or she herself will come upon some information. But we don't know when you are supposed to tell the kids. Do you treat it like everything else and just answer the question they asked? Her health right now does not warrant her knowing and being afraid.

So many hard things to figure out. People always make comments about how much "work" I do to keep her going. If they only knew how much thinking I do. The "work" is easy, because you know how and when to do it. It's the other things that are hard, if you know what I mean.
 
T

Terry

Guest
Thanks Tonya!

I know what you mean about "controlled" environment. That is the issue we have as well. Marissa knows the same as your son. She knows nothing of the "prognosis." We know that sooner or later someone will say something or she herself will come upon some information. But we don't know when you are supposed to tell the kids. Do you treat it like everything else and just answer the question they asked? Her health right now does not warrant her knowing and being afraid.

So many hard things to figure out. People always make comments about how much "work" I do to keep her going. If they only knew how much thinking I do. The "work" is easy, because you know how and when to do it. It's the other things that are hard, if you know what I mean.
 
T

Terry

Guest
Thanks Tonya!

I know what you mean about "controlled" environment. That is the issue we have as well. Marissa knows the same as your son. She knows nothing of the "prognosis." We know that sooner or later someone will say something or she herself will come upon some information. But we don't know when you are supposed to tell the kids. Do you treat it like everything else and just answer the question they asked? Her health right now does not warrant her knowing and being afraid.

So many hard things to figure out. People always make comments about how much "work" I do to keep her going. If they only knew how much thinking I do. The "work" is easy, because you know how and when to do it. It's the other things that are hard, if you know what I mean.
 
T

Terry

Guest
Thanks Tonya!

I know what you mean about "controlled" environment. That is the issue we have as well. Marissa knows the same as your son. She knows nothing of the "prognosis." We know that sooner or later someone will say something or she herself will come upon some information. But we don't know when you are supposed to tell the kids. Do you treat it like everything else and just answer the question they asked? Her health right now does not warrant her knowing and being afraid.

So many hard things to figure out. People always make comments about how much "work" I do to keep her going. If they only knew how much thinking I do. The "work" is easy, because you know how and when to do it. It's the other things that are hard, if you know what I mean.
 
T

Terry

Guest
Thanks Tonya!
<br />
<br />I know what you mean about "controlled" environment. That is the issue we have as well. Marissa knows the same as your son. She knows nothing of the "prognosis." We know that sooner or later someone will say something or she herself will come upon some information. But we don't know when you are supposed to tell the kids. Do you treat it like everything else and just answer the question they asked? Her health right now does not warrant her knowing and being afraid.
<br />
<br />So many hard things to figure out. People always make comments about how much "work" I do to keep her going. If they only knew how much thinking I do. The "work" is easy, because you know how and when to do it. It's the other things that are hard, if you know what I mean.
 
T

TonyaH

Guest
You hit that nail on the head! The med, treatments, tharapies, can all be done on autopilot. It's the thinking that really wears us down.

I, too, know there will come a day when Andrew will know about clinical outcomes with CF. However, I want to be the one to tell him. And now is just not the right time.

I am so glad you have joined this site!
 
T

TonyaH

Guest
You hit that nail on the head! The med, treatments, tharapies, can all be done on autopilot. It's the thinking that really wears us down.

I, too, know there will come a day when Andrew will know about clinical outcomes with CF. However, I want to be the one to tell him. And now is just not the right time.

I am so glad you have joined this site!
 
T

TonyaH

Guest
You hit that nail on the head! The med, treatments, tharapies, can all be done on autopilot. It's the thinking that really wears us down.

I, too, know there will come a day when Andrew will know about clinical outcomes with CF. However, I want to be the one to tell him. And now is just not the right time.

I am so glad you have joined this site!
 
T

TonyaH

Guest
You hit that nail on the head! The med, treatments, tharapies, can all be done on autopilot. It's the thinking that really wears us down.

I, too, know there will come a day when Andrew will know about clinical outcomes with CF. However, I want to be the one to tell him. And now is just not the right time.

I am so glad you have joined this site!
 
T

TonyaH

Guest
You hit that nail on the head! The med, treatments, tharapies, can all be done on autopilot. It's the thinking that really wears us down.
<br />
<br />I, too, know there will come a day when Andrew will know about clinical outcomes with CF. However, I want to be the one to tell him. And now is just not the right time.
<br />
<br />I am so glad you have joined this site!
 
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