Thoughts on Make a Wish

[Cherylwithone]

My 2 cents. Did anyone think to ask your daughter "Honey if you could have a wish what would it be?" She does not need to know that wishes can be granted.
<br />
<br />Also, you never know what tomorrow might bring. You should go when she is healthy so that SHE can enjoy herself.
<br />
<br />My boss paid for my family to go to Disney World so my daughters Make A Wish was a photo shoot with someone from NATGEO. Which she did and enjoyed.

 

[Mommafirst]

gosh, I am so thankful for all the adult replies here. It is so awesome to hear it from a patient's perspective. I have asked my daughter if she had one wish...but it could change from having fresh baked chocolate chip cookies to a Disney trip in the blink of an eye.

I don't expect this to happen quickly, my husband and I are just trying to figure out if this is something to pursue now.

Shelly, I will definitely ask your dad when I see him. Great idea!!!!

 

[Mommafirst]

gosh, I am so thankful for all the adult replies here. It is so awesome to hear it from a patient's perspective. I have asked my daughter if she had one wish...but it could change from having fresh baked chocolate chip cookies to a Disney trip in the blink of an eye.

I don't expect this to happen quickly, my husband and I are just trying to figure out if this is something to pursue now.

Shelly, I will definitely ask your dad when I see him. Great idea!!!!

 

[Mommafirst]

gosh, I am so thankful for all the adult replies here. It is so awesome to hear it from a patient's perspective. I have asked my daughter if she had one wish...but it could change from having fresh baked chocolate chip cookies to a Disney trip in the blink of an eye.
<br />
<br />I don't expect this to happen quickly, my husband and I are just trying to figure out if this is something to pursue now.
<br />
<br />Shelly, I will definitely ask your dad when I see him. Great idea!!!!

 

[hmw]

This is something I am starting to think about in the back of my mind, too. I have the same thoughts too... worrying about taking a wish away from a more 'worthy' child, but at the same time, I know many kids with other health conditions that aren't expected to ever come back or be 'lifelong' are granted wishes... it's so hard. On paper, Emily's CF in some ways is not bad (great pft's.) In day to day life, though, health issues consume our whole family's life and have financially decimated us. She has the feeding tube and the typical treatments all our kids have, but multiple health conditions. When she gets sick (which is often) she doesn't necessarily land in the hospital, but it knocks her out at home for weeks, not days.

Emily is older than Alyssa- she's 9.5 and probably at a wonderful age to enjoy Disney. She'd probably equally enjoy being a Princess at Cinderella's castle and a Jedi at the Star Wars thing they have there now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's something, if I get up the nerve, I will probably ask the clinic social worker about at some point.

It will be important for you and dh to be on the same page... you'll have to get Alyssa's thoughts on a wish in more concrete terms, lol. 'If you could GO anywhere in the world, where would it be?' (hmmm, if she was hungry, would it be 'a chocolate chip cookie factory?? Ask her after lunch...) I don't know if this helps at all, but the one time we did a family Disney trip, the kids were 11mo, 3 and just about 5. The boys barely remember any of it at this point; just snatches. They of course talked about it all the time for the first couple years after we went and wanted to go back, but now at 11.5 and 13, they want to go back and do the 'big kid' things and remember very very little about what they already did there (the little they remember is bits and pieces of fireworks, parades, a couple dramatic shows.)

eta> we knew when we went it was too young, ideally, for them to go to Disney... but a very close friend lives there and the trip was as much to visit her family. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

This is something I am starting to think about in the back of my mind, too. I have the same thoughts too... worrying about taking a wish away from a more 'worthy' child, but at the same time, I know many kids with other health conditions that aren't expected to ever come back or be 'lifelong' are granted wishes... it's so hard. On paper, Emily's CF in some ways is not bad (great pft's.) In day to day life, though, health issues consume our whole family's life and have financially decimated us. She has the feeding tube and the typical treatments all our kids have, but multiple health conditions. When she gets sick (which is often) she doesn't necessarily land in the hospital, but it knocks her out at home for weeks, not days.

Emily is older than Alyssa- she's 9.5 and probably at a wonderful age to enjoy Disney. She'd probably equally enjoy being a Princess at Cinderella's castle and a Jedi at the Star Wars thing they have there now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's something, if I get up the nerve, I will probably ask the clinic social worker about at some point.

It will be important for you and dh to be on the same page... you'll have to get Alyssa's thoughts on a wish in more concrete terms, lol. 'If you could GO anywhere in the world, where would it be?' (hmmm, if she was hungry, would it be 'a chocolate chip cookie factory?? Ask her after lunch...) I don't know if this helps at all, but the one time we did a family Disney trip, the kids were 11mo, 3 and just about 5. The boys barely remember any of it at this point; just snatches. They of course talked about it all the time for the first couple years after we went and wanted to go back, but now at 11.5 and 13, they want to go back and do the 'big kid' things and remember very very little about what they already did there (the little they remember is bits and pieces of fireworks, parades, a couple dramatic shows.)

eta> we knew when we went it was too young, ideally, for them to go to Disney... but a very close friend lives there and the trip was as much to visit her family. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

This is something I am starting to think about in the back of my mind, too. I have the same thoughts too... worrying about taking a wish away from a more 'worthy' child, but at the same time, I know many kids with other health conditions that aren't expected to ever come back or be 'lifelong' are granted wishes... it's so hard. On paper, Emily's CF in some ways is not bad (great pft's.) In day to day life, though, health issues consume our whole family's life and have financially decimated us. She has the feeding tube and the typical treatments all our kids have, but multiple health conditions. When she gets sick (which is often) she doesn't necessarily land in the hospital, but it knocks her out at home for weeks, not days.
<br />
<br />Emily is older than Alyssa- she's 9.5 and probably at a wonderful age to enjoy Disney. She'd probably equally enjoy being a Princess at Cinderella's castle and a Jedi at the Star Wars thing they have there now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's something, if I get up the nerve, I will probably ask the clinic social worker about at some point.
<br />
<br />It will be important for you and dh to be on the same page... you'll have to get Alyssa's thoughts on a wish in more concrete terms, lol. 'If you could GO anywhere in the world, where would it be?' (hmmm, if she was hungry, would it be 'a chocolate chip cookie factory?? Ask her after lunch...) I don't know if this helps at all, but the one time we did a family Disney trip, the kids were 11mo, 3 and just about 5. The boys barely remember any of it at this point; just snatches. They of course talked about it all the time for the first couple years after we went and wanted to go back, but now at 11.5 and 13, they want to go back and do the 'big kid' things and remember very very little about what they already did there (the little they remember is bits and pieces of fireworks, parades, a couple dramatic shows.)
<br />
<br />eta> we knew when we went it was too young, ideally, for them to go to Disney... but a very close friend lives there and the trip was as much to visit her family. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />

 

[CountryGirl]

I made my Wish when I was 15 and it was to go to a Rolling Stones concert and then I got to pick where I wanted to see them, at this time they werent allowing people to leave the country for wishes otherwise that would be my wish.
My sister made her wish when she was 17 and it was to go to Australia, and we all went, it was a great time and we went for 10 days.

I personally think that you should wait till your child is older and can think more about what their wish would mean to them and what they want to do. Also, at age 5 she won't remember much of it and be able to enjoy it to its fullest extent...she'll grow up and remember going but will have forgotten things about it. She won't have as good of a memory as should would if she got her wish and experienced it if she were older. It's not like you have to wait ten yrs till she's 15 but maybe till she's ten or twelve.

 

[CountryGirl]

I made my Wish when I was 15 and it was to go to a Rolling Stones concert and then I got to pick where I wanted to see them, at this time they werent allowing people to leave the country for wishes otherwise that would be my wish.
My sister made her wish when she was 17 and it was to go to Australia, and we all went, it was a great time and we went for 10 days.

I personally think that you should wait till your child is older and can think more about what their wish would mean to them and what they want to do. Also, at age 5 she won't remember much of it and be able to enjoy it to its fullest extent...she'll grow up and remember going but will have forgotten things about it. She won't have as good of a memory as should would if she got her wish and experienced it if she were older. It's not like you have to wait ten yrs till she's 15 but maybe till she's ten or twelve.

 

[CountryGirl]

I made my Wish when I was 15 and it was to go to a Rolling Stones concert and then I got to pick where I wanted to see them, at this time they werent allowing people to leave the country for wishes otherwise that would be my wish.
<br />My sister made her wish when she was 17 and it was to go to Australia, and we all went, it was a great time and we went for 10 days.
<br />
<br />I personally think that you should wait till your child is older and can think more about what their wish would mean to them and what they want to do. Also, at age 5 she won't remember much of it and be able to enjoy it to its fullest extent...she'll grow up and remember going but will have forgotten things about it. She won't have as good of a memory as should would if she got her wish and experienced it if she were older. It's not like you have to wait ten yrs till she's 15 but maybe till she's ten or twelve.

 

[izemmom]

OK, this is a REAL shock to me, Heather, but I'm with your husband on this one, not you. I KNOW! You and I ALWAYS agree! LOL

We did do Disney last year, on our own dime. We got the Disney credit card a year before (needed a new card anyway) and charged all gas and groceries for a year on it, paying the balance in full every month. Earned a pretty nice cash back bonus which we applied directly to our Disney stay. We booked while the meal plan was free and stayed in a value resort. We took 3 months to pay off the remainder of the trip, and it was by NO MEANS Disney for the well to do...but it was FANTASTIC. My girls were 4 and 7 at the time and LOVED EVERY MINUTE OF IT! We will probably never go again, and it will be a few years before we can afford another family trip, but, that was the decision we made.

I feel that the Make a Wish should be reserved for EMILY to decide on when she is able to. I also think that she should have the opportunity to ask for something that her Dad and I CAN'T possibly provide, like a meeting with a celebrity, a over the top experience or a really cool shopping spree. Knowing her, she'll want to tour a factory where firetrucks are made or sometning like that, but, it's HER wish.

I think by the time she's 10 or so I'll start looking in to it, but not now. I want it to be hers. All hers. Nothing else in this world is.

As for Disney, if you really want to go and MAW is the only way, then do it. Having been there only once, and as a parent, I do think it's one of those things that you just have to do. You won't be sorry you went, wether it's with MAW or on your own. (Feel free to PM or FB me to hear other ways that we made the trip pretty cheap...).

 

[izemmom]

OK, this is a REAL shock to me, Heather, but I'm with your husband on this one, not you. I KNOW! You and I ALWAYS agree! LOL

We did do Disney last year, on our own dime. We got the Disney credit card a year before (needed a new card anyway) and charged all gas and groceries for a year on it, paying the balance in full every month. Earned a pretty nice cash back bonus which we applied directly to our Disney stay. We booked while the meal plan was free and stayed in a value resort. We took 3 months to pay off the remainder of the trip, and it was by NO MEANS Disney for the well to do...but it was FANTASTIC. My girls were 4 and 7 at the time and LOVED EVERY MINUTE OF IT! We will probably never go again, and it will be a few years before we can afford another family trip, but, that was the decision we made.

I feel that the Make a Wish should be reserved for EMILY to decide on when she is able to. I also think that she should have the opportunity to ask for something that her Dad and I CAN'T possibly provide, like a meeting with a celebrity, a over the top experience or a really cool shopping spree. Knowing her, she'll want to tour a factory where firetrucks are made or sometning like that, but, it's HER wish.

I think by the time she's 10 or so I'll start looking in to it, but not now. I want it to be hers. All hers. Nothing else in this world is.

As for Disney, if you really want to go and MAW is the only way, then do it. Having been there only once, and as a parent, I do think it's one of those things that you just have to do. You won't be sorry you went, wether it's with MAW or on your own. (Feel free to PM or FB me to hear other ways that we made the trip pretty cheap...).

 

[izemmom]

OK, this is a REAL shock to me, Heather, but I'm with your husband on this one, not you. I KNOW! You and I ALWAYS agree! LOL
<br />
<br />We did do Disney last year, on our own dime. We got the Disney credit card a year before (needed a new card anyway) and charged all gas and groceries for a year on it, paying the balance in full every month. Earned a pretty nice cash back bonus which we applied directly to our Disney stay. We booked while the meal plan was free and stayed in a value resort. We took 3 months to pay off the remainder of the trip, and it was by NO MEANS Disney for the well to do...but it was FANTASTIC. My girls were 4 and 7 at the time and LOVED EVERY MINUTE OF IT! We will probably never go again, and it will be a few years before we can afford another family trip, but, that was the decision we made.
<br />
<br />I feel that the Make a Wish should be reserved for EMILY to decide on when she is able to. I also think that she should have the opportunity to ask for something that her Dad and I CAN'T possibly provide, like a meeting with a celebrity, a over the top experience or a really cool shopping spree. Knowing her, she'll want to tour a factory where firetrucks are made or sometning like that, but, it's HER wish.
<br />
<br />I think by the time she's 10 or so I'll start looking in to it, but not now. I want it to be hers. All hers. Nothing else in this world is.
<br />
<br />As for Disney, if you really want to go and MAW is the only way, then do it. Having been there only once, and as a parent, I do think it's one of those things that you just have to do. You won't be sorry you went, wether it's with MAW or on your own. (Feel free to PM or FB me to hear other ways that we made the trip pretty cheap...).

 

[Mommafirst]

Ahh, Tami, I have great respect for your opinion (especially since it is so often MY opinion) that I can handle your divergnce from me!!! : )

Soooo many good replies here.... I'm definitely going to take some time before I decide on anything here. Maybe I will see about that cc you brought up, Tami, maybe we'll try to give our kids the Disney thing so that we can really save Alyssa's wish for Alyssa. I hope its feasible.

 

[Mommafirst]

Ahh, Tami, I have great respect for your opinion (especially since it is so often MY opinion) that I can handle your divergnce from me!!! : )

Soooo many good replies here.... I'm definitely going to take some time before I decide on anything here. Maybe I will see about that cc you brought up, Tami, maybe we'll try to give our kids the Disney thing so that we can really save Alyssa's wish for Alyssa. I hope its feasible.

 

[Mommafirst]

Ahh, Tami, I have great respect for your opinion (especially since it is so often MY opinion) that I can handle your divergnce from me!!! : )
<br />
<br />Soooo many good replies here.... I'm definitely going to take some time before I decide on anything here. Maybe I will see about that cc you brought up, Tami, maybe we'll try to give our kids the Disney thing so that we can really save Alyssa's wish for Alyssa. I hope its feasible.
<br />
<br />
<br />
<br />

 

[mamaScarlett]

I did a Dream Come True (same thing basically, it was the mid-80s). I was 5 yrs old. I was a very sick little kid-lots of hospitalizations. I never had a feeding tube or continuous IVs though.
Whether your child is relatively 'normal' or extremely sick-living with Cf is NOT normal, and is HARD! Not just for your little one, but for all of the family. My docs have always said-Whatever 'perk' you can get you should take bc life with Cf is hard and Cf stinks.
Example-I am 28 and a mom of (soon to be)2. When we went to Disney last year my doc wanted me to get a special pass to skip the lines. I really hesitated, bc as most of us Cfers-I don't look sick! But my doc insisted. Could I have waited in every line? Probably, but I would have been 2x as exhausted and 2x as dehydrated, which my doc was trying to avoid.

It will be great memories for her, but also for your other kids, and you as parents.

Funny story with Dream come true-I have always (literally since I was about 3) had a fascination with Egypt. When they came to me at 5 I asked to go Egypt. My mom kinda looked at me, took me aside and said-how about Disney world sweetie? I did eventually make it to Egypt anyway!

 

[mamaScarlett]

I did a Dream Come True (same thing basically, it was the mid-80s). I was 5 yrs old. I was a very sick little kid-lots of hospitalizations. I never had a feeding tube or continuous IVs though.
Whether your child is relatively 'normal' or extremely sick-living with Cf is NOT normal, and is HARD! Not just for your little one, but for all of the family. My docs have always said-Whatever 'perk' you can get you should take bc life with Cf is hard and Cf stinks.
Example-I am 28 and a mom of (soon to be)2. When we went to Disney last year my doc wanted me to get a special pass to skip the lines. I really hesitated, bc as most of us Cfers-I don't look sick! But my doc insisted. Could I have waited in every line? Probably, but I would have been 2x as exhausted and 2x as dehydrated, which my doc was trying to avoid.

It will be great memories for her, but also for your other kids, and you as parents.

Funny story with Dream come true-I have always (literally since I was about 3) had a fascination with Egypt. When they came to me at 5 I asked to go Egypt. My mom kinda looked at me, took me aside and said-how about Disney world sweetie? I did eventually make it to Egypt anyway!

 

[mamaScarlett]

I did a Dream Come True (same thing basically, it was the mid-80s). I was 5 yrs old. I was a very sick little kid-lots of hospitalizations. I never had a feeding tube or continuous IVs though.
<br />Whether your child is relatively 'normal' or extremely sick-living with Cf is NOT normal, and is HARD! Not just for your little one, but for all of the family. My docs have always said-Whatever 'perk' you can get you should take bc life with Cf is hard and Cf stinks.
<br />Example-I am 28 and a mom of (soon to be)2. When we went to Disney last year my doc wanted me to get a special pass to skip the lines. I really hesitated, bc as most of us Cfers-I don't look sick! But my doc insisted. Could I have waited in every line? Probably, but I would have been 2x as exhausted and 2x as dehydrated, which my doc was trying to avoid.
<br />
<br />It will be great memories for her, but also for your other kids, and you as parents.
<br />
<br />Funny story with Dream come true-I have always (literally since I was about 3) had a fascination with Egypt. When they came to me at 5 I asked to go Egypt. My mom kinda looked at me, took me aside and said-how about Disney world sweetie? I did eventually make it to Egypt anyway!
<br />

 

[ToriMom]

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