To "Make-A-Wish" or Not

C

cjg1233

New member
We have a healthy 5 y.o. w/o CF and a 3 y.o. w/CF. The 3 y.o. is relatively healthy; he's pancreatic insufficient, he's had several sinus surgeries, he currently has a G-tube, and has had a few other things, but all-in-all, he is very active and a pretty "normal" kid.

There is a local organization similar to the Make A Wish Foundation that has events throughout the year for children with life-threatening illnesses and their families. We signed him up, thinking it would be nice to go to the zoo or ball games or things like that, but we are now wondering if this will seem less normal to him at some point.

What have others done in terms of keeping their kids w/ CF as normal as possible vs. highlighting the "specialness" of their condition? Make-A-Wish and other organizations like them are very worthwhile and I think they do great things, don't get me wrong. We're just not sure it's right for us at this time.

Thanks!
 
C

cjg1233

New member
We have a healthy 5 y.o. w/o CF and a 3 y.o. w/CF. The 3 y.o. is relatively healthy; he's pancreatic insufficient, he's had several sinus surgeries, he currently has a G-tube, and has had a few other things, but all-in-all, he is very active and a pretty "normal" kid.

There is a local organization similar to the Make A Wish Foundation that has events throughout the year for children with life-threatening illnesses and their families. We signed him up, thinking it would be nice to go to the zoo or ball games or things like that, but we are now wondering if this will seem less normal to him at some point.

What have others done in terms of keeping their kids w/ CF as normal as possible vs. highlighting the "specialness" of their condition? Make-A-Wish and other organizations like them are very worthwhile and I think they do great things, don't get me wrong. We're just not sure it's right for us at this time.

Thanks!
 
C

cjg1233

New member
We have a healthy 5 y.o. w/o CF and a 3 y.o. w/CF. The 3 y.o. is relatively healthy; he's pancreatic insufficient, he's had several sinus surgeries, he currently has a G-tube, and has had a few other things, but all-in-all, he is very active and a pretty "normal" kid.

There is a local organization similar to the Make A Wish Foundation that has events throughout the year for children with life-threatening illnesses and their families. We signed him up, thinking it would be nice to go to the zoo or ball games or things like that, but we are now wondering if this will seem less normal to him at some point.

What have others done in terms of keeping their kids w/ CF as normal as possible vs. highlighting the "specialness" of their condition? Make-A-Wish and other organizations like them are very worthwhile and I think they do great things, don't get me wrong. We're just not sure it's right for us at this time.

Thanks!
 
J

JazzysMom

New member
To "Make-A-Wish

I understand your ????, but let me say this. CF can be unpredictable so I suggest that you go while your kids can truly enjoy it. Maybe if they were a bit older they could remember it better, but as far as health wise, you dont really want to wait until the health is so poor that enjoyment isnt as easy. No one is saying you have to do it immediately, but you dont have to wait until your child "APPEARS" truly sick. The daily grind of maintaining CF is enough to deserve these wishes. Timing is up to you.......even tho it would be because of CF....point out that its for all the hard work done on your childs part rather then the fact of him being "sick"!
 
J

JazzysMom

New member
To "Make-A-Wish

I understand your ????, but let me say this. CF can be unpredictable so I suggest that you go while your kids can truly enjoy it. Maybe if they were a bit older they could remember it better, but as far as health wise, you dont really want to wait until the health is so poor that enjoyment isnt as easy. No one is saying you have to do it immediately, but you dont have to wait until your child "APPEARS" truly sick. The daily grind of maintaining CF is enough to deserve these wishes. Timing is up to you.......even tho it would be because of CF....point out that its for all the hard work done on your childs part rather then the fact of him being "sick"!
 
J

JazzysMom

New member
To "Make-A-Wish

I understand your ????, but let me say this. CF can be unpredictable so I suggest that you go while your kids can truly enjoy it. Maybe if they were a bit older they could remember it better, but as far as health wise, you dont really want to wait until the health is so poor that enjoyment isnt as easy. No one is saying you have to do it immediately, but you dont have to wait until your child "APPEARS" truly sick. The daily grind of maintaining CF is enough to deserve these wishes. Timing is up to you.......even tho it would be because of CF....point out that its for all the hard work done on your childs part rather then the fact of him being "sick"!
 
M

MYBOY

New member
To "Make-A-Wish

I wondered the same thing sometimes. My son is 9 and relatively healthy. Like your son he has had many sinus surgeries - 4 to be exact the last one was just in October. But I agree with what Melissa said. Plus we never take vacations and can't really afford it. His doctor was the one that asked us about it. He knew Tanner was a Dolphin football fan and asked if he would like to go to a game or meet Dan Marino. He was so excited!! We decided to wait a year and then put his name in so that he could be a little older to remember it. But when I told someone about it they said - I thought that was just for terminal illnesses or kids really sick - so I did start to think that maybe we shouldn't ask either. But I don't think alot of people understand CF - just because they look healthy. But I think our little guys deserve it for all they go through and maybe we all deserve it!!
 
M

MYBOY

New member
To "Make-A-Wish

I wondered the same thing sometimes. My son is 9 and relatively healthy. Like your son he has had many sinus surgeries - 4 to be exact the last one was just in October. But I agree with what Melissa said. Plus we never take vacations and can't really afford it. His doctor was the one that asked us about it. He knew Tanner was a Dolphin football fan and asked if he would like to go to a game or meet Dan Marino. He was so excited!! We decided to wait a year and then put his name in so that he could be a little older to remember it. But when I told someone about it they said - I thought that was just for terminal illnesses or kids really sick - so I did start to think that maybe we shouldn't ask either. But I don't think alot of people understand CF - just because they look healthy. But I think our little guys deserve it for all they go through and maybe we all deserve it!!
 
M

MYBOY

New member
To "Make-A-Wish

I wondered the same thing sometimes. My son is 9 and relatively healthy. Like your son he has had many sinus surgeries - 4 to be exact the last one was just in October. But I agree with what Melissa said. Plus we never take vacations and can't really afford it. His doctor was the one that asked us about it. He knew Tanner was a Dolphin football fan and asked if he would like to go to a game or meet Dan Marino. He was so excited!! We decided to wait a year and then put his name in so that he could be a little older to remember it. But when I told someone about it they said - I thought that was just for terminal illnesses or kids really sick - so I did start to think that maybe we shouldn't ask either. But I don't think alot of people understand CF - just because they look healthy. But I think our little guys deserve it for all they go through and maybe we all deserve it!!
 
M

Mommafirst

Guest
To "Make-A-Wish

I think that is an interesting question. The way I see it, CF totally sucks and whether or not your son is immediately terminal or not, he does deserve a little something that will boost his spirits and keep him excited to live. I realize you want to help him to feel as normal as possible -- I want the same for my daughter. And we can do so, to a point. But normal kids don't spend hours every day doing treatments and medicines. And normal kids don't have to head to the hospital for weeks at a time. So is there any harm in showing him that all this work he does for his CF makes him special, and there are special treats for special boys? As long as you don't misrepresent the severity of his CF, I think its a great idea. I think its awfully frustrating that people who don't understand CF look at our kids and say, "well they look fine and healthy to me" and then comepletely miss all that they deal with.

I totally get your hesitation, but I say if you are given the opportunity to go for it. Perhaps we will someday too.
 
M

Mommafirst

Guest
To "Make-A-Wish

I think that is an interesting question. The way I see it, CF totally sucks and whether or not your son is immediately terminal or not, he does deserve a little something that will boost his spirits and keep him excited to live. I realize you want to help him to feel as normal as possible -- I want the same for my daughter. And we can do so, to a point. But normal kids don't spend hours every day doing treatments and medicines. And normal kids don't have to head to the hospital for weeks at a time. So is there any harm in showing him that all this work he does for his CF makes him special, and there are special treats for special boys? As long as you don't misrepresent the severity of his CF, I think its a great idea. I think its awfully frustrating that people who don't understand CF look at our kids and say, "well they look fine and healthy to me" and then comepletely miss all that they deal with.

I totally get your hesitation, but I say if you are given the opportunity to go for it. Perhaps we will someday too.
 
M

Mommafirst

Guest
To "Make-A-Wish

I think that is an interesting question. The way I see it, CF totally sucks and whether or not your son is immediately terminal or not, he does deserve a little something that will boost his spirits and keep him excited to live. I realize you want to help him to feel as normal as possible -- I want the same for my daughter. And we can do so, to a point. But normal kids don't spend hours every day doing treatments and medicines. And normal kids don't have to head to the hospital for weeks at a time. So is there any harm in showing him that all this work he does for his CF makes him special, and there are special treats for special boys? As long as you don't misrepresent the severity of his CF, I think its a great idea. I think its awfully frustrating that people who don't understand CF look at our kids and say, "well they look fine and healthy to me" and then comepletely miss all that they deal with.

I totally get your hesitation, but I say if you are given the opportunity to go for it. Perhaps we will someday too.
 
C

coltsfan715

New member
To "Make-A-Wish

DO IT!

I had a wish from Give Kids the World - I think that was the name of the organization. I was about 10 at the time. I loved it. I was relatively healthy at the time as well. I am personally glad my family did it. I will say that if your son is doing well I would maybe wait until he is a few years older just so he can remember what he did - at least a little bit. I remember bits and pieces of things but can not remember the whole experience.

The things I do recall I always smile at and laugh. It is a bit strange I will say to talk to people now and say Oh - I got a Wish when they mention the Make A Wish foundation. They NEVER believe me, and even if they think oh "poor girl" whatever. To me and I know this may sound horrible but I don't care ... it is one of the perks of having to deal with CF. All the stuff your child will go through - they will figure out that it is not normal on their own .. they will not need a "wish" from a Make A Wish type foundation to make them think they are not normal. They will just need to go to school for the first time and realize no other kids have to take enzymes wen they eat. Then as they get older it will be why doesn't so and so have to take medicines - treatments or CPT.

My parents looked at it as - give her something fun and exciting to remember and enjoy. At the time it was the best experience I had ever had. It is not something to be looked down upon in any way. Also most kids at a young age won't get it anyway. They will just think oh cool we got to go to such and such on vacation or we got to go to the zoo and do this or that OR whatever else you all do.

I say seize the opportunities you get and don't worry about the normalcy of them. It is normal for your family - who cares if it is normal for everyone else <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Take Care and I hope you are satisfied with whatever decision you make.

Lindsey
 
C

coltsfan715

New member
To "Make-A-Wish

DO IT!

I had a wish from Give Kids the World - I think that was the name of the organization. I was about 10 at the time. I loved it. I was relatively healthy at the time as well. I am personally glad my family did it. I will say that if your son is doing well I would maybe wait until he is a few years older just so he can remember what he did - at least a little bit. I remember bits and pieces of things but can not remember the whole experience.

The things I do recall I always smile at and laugh. It is a bit strange I will say to talk to people now and say Oh - I got a Wish when they mention the Make A Wish foundation. They NEVER believe me, and even if they think oh "poor girl" whatever. To me and I know this may sound horrible but I don't care ... it is one of the perks of having to deal with CF. All the stuff your child will go through - they will figure out that it is not normal on their own .. they will not need a "wish" from a Make A Wish type foundation to make them think they are not normal. They will just need to go to school for the first time and realize no other kids have to take enzymes wen they eat. Then as they get older it will be why doesn't so and so have to take medicines - treatments or CPT.

My parents looked at it as - give her something fun and exciting to remember and enjoy. At the time it was the best experience I had ever had. It is not something to be looked down upon in any way. Also most kids at a young age won't get it anyway. They will just think oh cool we got to go to such and such on vacation or we got to go to the zoo and do this or that OR whatever else you all do.

I say seize the opportunities you get and don't worry about the normalcy of them. It is normal for your family - who cares if it is normal for everyone else <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Take Care and I hope you are satisfied with whatever decision you make.

Lindsey
 
C

coltsfan715

New member
To "Make-A-Wish

DO IT!

I had a wish from Give Kids the World - I think that was the name of the organization. I was about 10 at the time. I loved it. I was relatively healthy at the time as well. I am personally glad my family did it. I will say that if your son is doing well I would maybe wait until he is a few years older just so he can remember what he did - at least a little bit. I remember bits and pieces of things but can not remember the whole experience.

The things I do recall I always smile at and laugh. It is a bit strange I will say to talk to people now and say Oh - I got a Wish when they mention the Make A Wish foundation. They NEVER believe me, and even if they think oh "poor girl" whatever. To me and I know this may sound horrible but I don't care ... it is one of the perks of having to deal with CF. All the stuff your child will go through - they will figure out that it is not normal on their own .. they will not need a "wish" from a Make A Wish type foundation to make them think they are not normal. They will just need to go to school for the first time and realize no other kids have to take enzymes wen they eat. Then as they get older it will be why doesn't so and so have to take medicines - treatments or CPT.

My parents looked at it as - give her something fun and exciting to remember and enjoy. At the time it was the best experience I had ever had. It is not something to be looked down upon in any way. Also most kids at a young age won't get it anyway. They will just think oh cool we got to go to such and such on vacation or we got to go to the zoo and do this or that OR whatever else you all do.

I say seize the opportunities you get and don't worry about the normalcy of them. It is normal for your family - who cares if it is normal for everyone else <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Take Care and I hope you are satisfied with whatever decision you make.

Lindsey
 
J

Jane

Digital opinion leader
To "Make-A-Wish

Definately do it!!!

Make-a-wish used to be for dying children, now it is for kids with a life-threatening illness, which of course ours do. I felt the same as you about the fine line between keeping the kids as normal as possible and then flaunting their illness to get something cool. But I got over it quick, when my son recieved his wish. He was treated like a king on his trip to Pearl Harbor (not a bad wish for the family as well).
Of course, my older son still has yet to make a wish because for a long time he said "if I make a wish it means I'm a sick kid", but he's coming around.
 
J

Jane

Digital opinion leader
To "Make-A-Wish

Definately do it!!!

Make-a-wish used to be for dying children, now it is for kids with a life-threatening illness, which of course ours do. I felt the same as you about the fine line between keeping the kids as normal as possible and then flaunting their illness to get something cool. But I got over it quick, when my son recieved his wish. He was treated like a king on his trip to Pearl Harbor (not a bad wish for the family as well).
Of course, my older son still has yet to make a wish because for a long time he said "if I make a wish it means I'm a sick kid", but he's coming around.
 
J

Jane

Digital opinion leader
To "Make-A-Wish

Definately do it!!!

Make-a-wish used to be for dying children, now it is for kids with a life-threatening illness, which of course ours do. I felt the same as you about the fine line between keeping the kids as normal as possible and then flaunting their illness to get something cool. But I got over it quick, when my son recieved his wish. He was treated like a king on his trip to Pearl Harbor (not a bad wish for the family as well).
Of course, my older son still has yet to make a wish because for a long time he said "if I make a wish it means I'm a sick kid", but he's coming around.
 
M

momofjosh

New member
To "Make-A-Wish

Do It!!! We went on a make-a-wish vacation when my son was 17 yrs. old and fairly healthy. It was the best thing we did! The whole family went along and we had a great time! It is a wonderful memory we now have of my son's life. You have to do things while they are healthy and can enjoy them!

Kathy
 
M

momofjosh

New member
To "Make-A-Wish

Do It!!! We went on a make-a-wish vacation when my son was 17 yrs. old and fairly healthy. It was the best thing we did! The whole family went along and we had a great time! It is a wonderful memory we now have of my son's life. You have to do things while they are healthy and can enjoy them!

Kathy
 
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