Thoughts on Make a Wish

T

ToriMom

Guest
I cannot really say one way or the other what I think you should do about MAW. I struggled with the same questions about whether our daughter was sick enough to apply, when to apply, whether to wait for her to choose her own wish, etc. No easy decision for sure, but we have not done a MAW trip yet, and our daughter is now nine. What I did want to share with you is that we did take our children to DisneyWorld when our CF child was about five, and it was an incredible experience for her. I think there is something to be said for taking the trip to Disney at that great age when they are old enough to remember it, but young enough to be fascinated by the magic. We went this year again, and it is just not the same now that she is old enough to know about special effects and people dressed up in costumes. It was very fun, but an entirely different experience. I hope the finances come through for your family through MAW or otherwise; you are right, the entire family deserves a fun vacation. Tori has a g-tube as well, btw.
Hugs,
Michelle
 
T

ToriMom

Guest
I cannot really say one way or the other what I think you should do about MAW. I struggled with the same questions about whether our daughter was sick enough to apply, when to apply, whether to wait for her to choose her own wish, etc. No easy decision for sure, but we have not done a MAW trip yet, and our daughter is now nine. What I did want to share with you is that we did take our children to DisneyWorld when our CF child was about five, and it was an incredible experience for her. I think there is something to be said for taking the trip to Disney at that great age when they are old enough to remember it, but young enough to be fascinated by the magic. We went this year again, and it is just not the same now that she is old enough to know about special effects and people dressed up in costumes. It was very fun, but an entirely different experience. I hope the finances come through for your family through MAW or otherwise; you are right, the entire family deserves a fun vacation. Tori has a g-tube as well, btw.
<br />Hugs,
<br />Michelle
 
M

Mumtaz

New member
I also went to Disney with Make-A-Wish when I was about 10. Of course, my original request was to see Steve Irwin because I loved reptiles. Of course, that wasn't possible. If I would give you any advice, it would be to try and get something with a cruise. We managed to book a two week vacation to Disney, and to the Bahamas through the Disney Cruise Line with full reservations. Definitely shoot for a room with a balcony. Sitting on the side of the cruise ship, watching the sun set over the ocean is a memory I still keep with me even until today. I think I was a little too young to fully appreciate the trip, but it was an incredible experience. My parents enjoyed the dining as well.
 
M

Mumtaz

New member
I also went to Disney with Make-A-Wish when I was about 10. Of course, my original request was to see Steve Irwin because I loved reptiles. Of course, that wasn't possible. If I would give you any advice, it would be to try and get something with a cruise. We managed to book a two week vacation to Disney, and to the Bahamas through the Disney Cruise Line with full reservations. Definitely shoot for a room with a balcony. Sitting on the side of the cruise ship, watching the sun set over the ocean is a memory I still keep with me even until today. I think I was a little too young to fully appreciate the trip, but it was an incredible experience. My parents enjoyed the dining as well.
 
M

Mumtaz

New member
I also went to Disney with Make-A-Wish when I was about 10. Of course, my original request was to see Steve Irwin because I loved reptiles. Of course, that wasn't possible. If I would give you any advice, it would be to try and get something with a cruise. We managed to book a two week vacation to Disney, and to the Bahamas through the Disney Cruise Line with full reservations. Definitely shoot for a room with a balcony. Sitting on the side of the cruise ship, watching the sun set over the ocean is a memory I still keep with me even until today. I think I was a little too young to fully appreciate the trip, but it was an incredible experience. My parents enjoyed the dining as well.
 
W

welshwitch

Guest
Here's my take on it:

My family never did Make-A-Wish, but when I was little I enjoyed all the "perks" CF brought (well, not perks, but consellation prizes). I got to draw the lottery at CF golf tournament fundraisers, visit a CF camp where I got to eat all the candy I wanted, and could always stay home from school whenever I wanted to and could eat as much dinner and dessert that I wanted to. To be honest, I sometimes took advantage of this stuff.

If I had gotten the chance to go to Disney land as a young kid (say 11 and under) I would have LOVED IT! And not cared much about the reason we were going and who was funding it. I would have probably been aware that my CF was the reason we were going, but I would have been too excited about it to really care.

If I had gotten the chance to do it as a teenager, or even young adult, I would NOT have wanted to do it. Why ? Because by the time I got older I because super, super self-conscious of myself, my disease, and the idea that I might now live to be an adult. In fact I just wanted to forget I even had CF in the first place and just be "normal."

There was no way I would have gone for it, and in fact I would have hated the idea of it.

I'm not saying my attitude was right, in fact it was probably a really screwed up way of looking at it. I'm also not saying that's how your daughter is going to feel about it. But I guess I would just be aware that a trip now and later will have probably have very different meanings for your daughter. If you go now, there is no way she won't have a great time and she will want to do it. But if you wait until she's older, and has gotten a chance to really think about CF and learn about all the things about it that will affect her life greatly, she may have second thoughts about it. Or, she will still want to do it and will have a very mature viewpoint on it and be able to handle it, and it could be a great experience for your daughter and your family.

Just my 2 cents.
 
W

welshwitch

Guest
Here's my take on it:

My family never did Make-A-Wish, but when I was little I enjoyed all the "perks" CF brought (well, not perks, but consellation prizes). I got to draw the lottery at CF golf tournament fundraisers, visit a CF camp where I got to eat all the candy I wanted, and could always stay home from school whenever I wanted to and could eat as much dinner and dessert that I wanted to. To be honest, I sometimes took advantage of this stuff.

If I had gotten the chance to go to Disney land as a young kid (say 11 and under) I would have LOVED IT! And not cared much about the reason we were going and who was funding it. I would have probably been aware that my CF was the reason we were going, but I would have been too excited about it to really care.

If I had gotten the chance to do it as a teenager, or even young adult, I would NOT have wanted to do it. Why ? Because by the time I got older I because super, super self-conscious of myself, my disease, and the idea that I might now live to be an adult. In fact I just wanted to forget I even had CF in the first place and just be "normal."

There was no way I would have gone for it, and in fact I would have hated the idea of it.

I'm not saying my attitude was right, in fact it was probably a really screwed up way of looking at it. I'm also not saying that's how your daughter is going to feel about it. But I guess I would just be aware that a trip now and later will have probably have very different meanings for your daughter. If you go now, there is no way she won't have a great time and she will want to do it. But if you wait until she's older, and has gotten a chance to really think about CF and learn about all the things about it that will affect her life greatly, she may have second thoughts about it. Or, she will still want to do it and will have a very mature viewpoint on it and be able to handle it, and it could be a great experience for your daughter and your family.

Just my 2 cents.
 
W

welshwitch

Guest
Here's my take on it:
<br />
<br />My family never did Make-A-Wish, but when I was little I enjoyed all the "perks" CF brought (well, not perks, but consellation prizes). I got to draw the lottery at CF golf tournament fundraisers, visit a CF camp where I got to eat all the candy I wanted, and could always stay home from school whenever I wanted to and could eat as much dinner and dessert that I wanted to. To be honest, I sometimes took advantage of this stuff.
<br />
<br />If I had gotten the chance to go to Disney land as a young kid (say 11 and under) I would have LOVED IT! And not cared much about the reason we were going and who was funding it. I would have probably been aware that my CF was the reason we were going, but I would have been too excited about it to really care.
<br />
<br />If I had gotten the chance to do it as a teenager, or even young adult, I would NOT have wanted to do it. Why ? Because by the time I got older I because super, super self-conscious of myself, my disease, and the idea that I might now live to be an adult. In fact I just wanted to forget I even had CF in the first place and just be "normal."
<br />
<br />There was no way I would have gone for it, and in fact I would have hated the idea of it.
<br />
<br />I'm not saying my attitude was right, in fact it was probably a really screwed up way of looking at it. I'm also not saying that's how your daughter is going to feel about it. But I guess I would just be aware that a trip now and later will have probably have very different meanings for your daughter. If you go now, there is no way she won't have a great time and she will want to do it. But if you wait until she's older, and has gotten a chance to really think about CF and learn about all the things about it that will affect her life greatly, she may have second thoughts about it. Or, she will still want to do it and will have a very mature viewpoint on it and be able to handle it, and it could be a great experience for your daughter and your family.
<br />
<br />Just my 2 cents.
 
T

TestifyToLove

New member
We did MAW last year with M. After we got the news that he is not a candidate for liver transplant, several of his care team, as well as several members here strongly urged us to quit waiting for the "perfect" time. Mel was the one who finally knocked me over the head and told me to quit waiting, that M might not have time to wait.

M was 7 and his only wish was that he wanted to meet Mickey Mouse. M is the functional level of a 4 year old, his autism means he might never progress much further. And, the best his Heptologist will tell us is that he has "a few years" left.

Unfortunately, M has never gotten a break in his life. While his liver cirrohsis has not progressed in the last year, if we had waited until he could understand to try and choose for himself, he would have more than likely deteriorated beyond the ability to go.

And, that MAW trip is probably the ONE thing that M and all of his siblings have been given which allowed ALL of them to step away from this life and this disease. Everyone who we had contact with in MAW said this is when they prefer to provide a wish, when a child is actually strong and healthy and can really just enjoy this.

Seriously, if you do Disney with MAW, you go to Give Kids the World in Orlando. Oh my goodness, they will SPOIL your kids there. Its a kids wonderland, not just getting to go to Disney but everything else they provide for the kids as well. There are parties every night, everything is free for the kids. M and his baby sister fell in love with the Carousel at the GKTW Village. They still talk about it and miss it.
 
T

TestifyToLove

New member
We did MAW last year with M. After we got the news that he is not a candidate for liver transplant, several of his care team, as well as several members here strongly urged us to quit waiting for the "perfect" time. Mel was the one who finally knocked me over the head and told me to quit waiting, that M might not have time to wait.

M was 7 and his only wish was that he wanted to meet Mickey Mouse. M is the functional level of a 4 year old, his autism means he might never progress much further. And, the best his Heptologist will tell us is that he has "a few years" left.

Unfortunately, M has never gotten a break in his life. While his liver cirrohsis has not progressed in the last year, if we had waited until he could understand to try and choose for himself, he would have more than likely deteriorated beyond the ability to go.

And, that MAW trip is probably the ONE thing that M and all of his siblings have been given which allowed ALL of them to step away from this life and this disease. Everyone who we had contact with in MAW said this is when they prefer to provide a wish, when a child is actually strong and healthy and can really just enjoy this.

Seriously, if you do Disney with MAW, you go to Give Kids the World in Orlando. Oh my goodness, they will SPOIL your kids there. Its a kids wonderland, not just getting to go to Disney but everything else they provide for the kids as well. There are parties every night, everything is free for the kids. M and his baby sister fell in love with the Carousel at the GKTW Village. They still talk about it and miss it.
 
T

TestifyToLove

New member
We did MAW last year with M. After we got the news that he is not a candidate for liver transplant, several of his care team, as well as several members here strongly urged us to quit waiting for the "perfect" time. Mel was the one who finally knocked me over the head and told me to quit waiting, that M might not have time to wait.
<br />
<br />M was 7 and his only wish was that he wanted to meet Mickey Mouse. M is the functional level of a 4 year old, his autism means he might never progress much further. And, the best his Heptologist will tell us is that he has "a few years" left.
<br />
<br />Unfortunately, M has never gotten a break in his life. While his liver cirrohsis has not progressed in the last year, if we had waited until he could understand to try and choose for himself, he would have more than likely deteriorated beyond the ability to go.
<br />
<br />And, that MAW trip is probably the ONE thing that M and all of his siblings have been given which allowed ALL of them to step away from this life and this disease. Everyone who we had contact with in MAW said this is when they prefer to provide a wish, when a child is actually strong and healthy and can really just enjoy this.
<br />
<br />Seriously, if you do Disney with MAW, you go to Give Kids the World in Orlando. Oh my goodness, they will SPOIL your kids there. Its a kids wonderland, not just getting to go to Disney but everything else they provide for the kids as well. There are parties every night, everything is free for the kids. M and his baby sister fell in love with the Carousel at the GKTW Village. They still talk about it and miss it.
 
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