Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[Corrine 1973]

Just a vent, but...

They closed the MAW Chapter of RI (aka, the Chapter I got my wish from!) today.



After 17 (?) years of operation, MAWF of RI closed its doors. I'm so bummed about this. My whole family is, really. Hard to believe that 10 years ago, two Wish Granters were sitting in our living room, asking me what I wanted for my wish. Of course, I went to WDW! I was 6 at the time, and am turning 16 in July. We've been volunteering with them ever since!

I just need a hug

This is a sad day indeed.

 

[maroo]

Just a vent, but...

They closed the MAW Chapter of RI (aka, the Chapter I got my wish from!) today.



After 17 (?) years of operation, MAWF of RI closed its doors. I'm so bummed about this. My whole family is, really. Hard to believe that 10 years ago, two Wish Granters were sitting in our living room, asking me what I wanted for my wish. Of course, I went to WDW! I was 6 at the time, and am turning 16 in July. We've been volunteering with them ever since!

I just need a hug

Oh my gosh!! I am so sorry.

Tell your family I am really sorry!!!!

 

[that's nice]

Maroo,
Thanks for pointing to this thread. Its 70 pages deep.......i guess I have some reading to keep my busy for a while!!!!

 

[Andreaswish]

Amandasparks730,

That is so sad. Sending you hugs!!

Diane

 

[maroo]

Maroo,
Thanks for pointing to this thread. Its 70 pages deep.......i guess I have some reading to keep my busy for a while!!!!

Yeah...when you finish those 70 pages, you can go to page 1 and read all of the TRs and pre-trip reports on that page.


Welcome!!!

And Wish Trippers...I invited that's nice to come over and join us over here...He wrote a great trip report...

http://www.disboards.com/showthread.php?t=2115466

And the star of the show is a young cancer survivor! While it was not a wish trip, it was definitely magical and funny in parts...and she will one day be a wish child.

 

[iu97alum]

And Wish Trippers...I invited that's nice to come over and join us over here...He wrote a great trip report...

http://www.disboards.com/showthread.php?t=2115466

And the star of the show is a young cancer survivor! While it was not a wish trip, it was definitely magical and funny in parts...and she will one day be a wish child.

She's a WILMS survivor like Emy!!! I have find some time to read the whole TR!

 

[maroo]

She's a WILMS survivor like Emy!!! I have find some time to read the whole TR!

Now see...this is why I LOVE the DISboards!!!!

 

[5dwarves]

i do have a couple of questions..did anyone take a computer?? i read somewhere that the rental of STROLLERS there at the park are FREE for the GKTW guests?? if this is true, i am trying to decided if i should take my 17 m old stroller with us or not?? probably...

anyway, thanks again and i will continue to READ and get INFORMED!!!

Hey Queengonzo:

Yes, I took a laptop with me. There is wireless service in places at GKTW, but it is spotty. We hooked into the phone line in the villa at night and dealt with dial up because it was actually easier than changing chairs and leaning forward and facing a window and jumping through hoops to keep the wireless connection in the arcade at GKTW. You are pretty exhausted though by the time you get home, so you probably won't do much computing.

Maroo told you that strollers are free. They are free at Disney and Universal. At Disney your GKTW button gets you a stroller (two in my case). At Universal you will get a ticket for a free stroller from the desk at GKTW. ( I picked ours up the evening before we went so I wouldn't have any morning delays.) The strollers are pretty big though...more like a rickshaw for toddler and elementary age kids than a true baby stroller. Allears.net has pictures of them, and there are pictures on my TR of my boys in them as well. They may be too big for your 17 month old. You can always "pad" it with towels so that you don't have to deal with lugging your own through the airport and the parks. Another thing to consider is that the disney stroller won't get stolen, but yours might. It is the happiest place on earth, but you still need to exercise caution with your personal belongings.

 

[5dwarves]

Hi everyone! I couldn't even tell you how I got here, but here I am! We will be going to Disney World next Thursday (April 9-15). We, also will be staying at GKTW.

My middle daughter was born with chronic renal disease, and had a kidney transplant in July of '07. I'm feeling sort of guilty about being given this opportunity, as I don't look at her illness as "chronic", or as she being terminally ill. I am in need of someone to tell me that she deserves this, as I've seen other children more deserving. Am I making any sense?

Hey Becky:

I see that many others have already commented on this and encouraged you. You will find a lot of that around here! Welcome to the Wish trippers thread and welcome to the disboards...you will find a lot of great information, even though you only have a little time left before you leave for Orlando!

My son was born with chronic liver disease and had to have a transplant. He was 7 when he received his new liver. Before that time, he was hospitalized 23 times prior to transplant with the stays varying from 1 to 9 weeks at a time. I am sure your road to transplant and good health has been bumpy as well, filled with uncertainty, worry and ultimately relief (mixed with a little anxiety.) When we received our nomination letter from our wish agency, Magic Moments, it was totally out of the blue. I was extremely surprised. I will never forget that our agency was careful not to alarm me; they specifically said that the wishes were for children who had life altering illnesses and not only for children who had terminal illnesses. Your little one probably went through extensive testing, dialysis and then ultimately life saving surgery and recovery. I imagine that, like my son Adam, she will be on medication for the rest of her life. She more than qualifies for the "life changing" stipulations.

Using myself as an example, I think parents of children with chronic illness have the tendency to cocoon ourselves from the rest of the world. Our family and friends, although precious, don't really fully understand everything we are going through, and many times it is just easier to live in our own bubbles and deal with everything ourselves. Don't. Let someone like your wish agency and GKTW remind you that there is more to your lives than just the illness...that someone cares enough to make sure that you get a repreive from the every day burdens your family has been carrying. Enjoy every minute. Giving is definitely very rewarding. Make sure to let those people who are giving to you enjoy their excitement in doing so! Your family and your daughter definitely deserve this!

Please let us know if there are any specifics you need...there is a lot to read here, there may be things you miss...like VIP lounges that are accessible by wish families. Let us know if we can help.

~Elisa

 

[5dwarves]

Hi,

Does anyone know when they do the afternoon orientation at the GTKW complex? We are supposed to arrive to the airport in Orlando at 3:00 p.m. and will probably arrive at GTKW after 4:00 p.m. So I was wondering if I can do the orentation on the day arrive or if we have to wait until the next morning. We were hoping to get an early start that morning by going to one of the Disney parks. We have only a short time to get everything we want to get done.

There are two orientations. One is early afternoon (around 3:00 I think) and the other is at about 7:00-7:30. If you are getting to GTKW at 4:00 they will take you to your villa right away. It will take a little bit to get settled so that will kill some time, then you can go get dinner at the Gingerbread house. The kids can ride the carousel, go into the play house, go to the play ground, etc. One adult can go to the orientation, while the other takes the kids to the movie theater at GKTW. Several parents at my orientation showed up with banana splits , so throw the ice cream palace in there too.

 

[BeckySob]

Hey Becky:

I see that many others have already commented on this and encouraged you. You will find a lot of that around here! Welcome to the Wish trippers thread and welcome to the disboards...you will find a lot of great information, even though you only have a little time left before you leave for Orlando!

My son was born with chronic liver disease and had to have a transplant. He was 7 when he received his new liver. Before that time, he was hospitalized 23 times prior to transplant with the stays varying from 1 to 9 weeks at a time. I am sure your road to transplant and good health has been bumpy as well, filled with uncertainty, worry and ultimately relief (mixed with a little anxiety.) When we received our nomination letter from our wish agency, Magic Moments, it was totally out of the blue. I was extremely surprised. I will never forget that our agency was careful not to alarm me; they specifically said that the wishes were for children who had life altering illnesses and not only for children who had terminal illnesses. Your little one probably went through extensive testing, dialysis and then ultimately life saving surgery and recovery. I imagine that, like my son Adam, she will be on medication for the rest of her life. She more than qualifies for the "life changing" stipulations.

Using myself as an example, I think parents of children with chronic illness have the tendency to cocoon ourselves from the rest of the world. Our family and friends, although precious, don't really fully understand everything we are going through, and many times it is just easier to live in our own bubbles and deal with everything ourselves. Don't. Let someone like your wish agency and GKTW remind you that there is more to your lives than just the illness...that someone cares enough to make sure that you get a repreive from the every day burdens your family has been carrying. Enjoy every minute. Giving is definitely very rewarding. Make sure to let those people who are giving to you enjoy their excitement in doing so! Your family and your daughter definitely deserve this!

Please let us know if there are any specifics you need...there is a lot to read here, there may be things you miss...like VIP lounges that are accessible by wish families. Let us know if we can help.

~Elisa

Wow.....can you put any more tears in my eyes. You described me to a "T". I'm still working on the "feeling guilty" attitude of mine. I have to keep telling myself, my oldest is just as deserving because of all the attention Piper was getting during the 7-8 years she was sick and back and forth from doctor to doctor, to blood works, hospitalizations. My youngest was just 1 year old at the time of transplant, being the one donating the kidney, I wasn't able to hold her for 6 weeks!

All the people on here are amazing! I pray nightly for all these families, and all the families that are not on these DisBoards. I wish that I had more time to reply to more posts.

I do have a question:
Are there hair dryers at GKTW? I'm really worried about my hair. I don't exactly have hair for a ponytail, and I think that I look awful in a baseball cap. LOL

 

[BeckySob]

I had the same feelings that you did! I was given some really good advice that I will quote:

Sorry that I am just now replying to this......

Thanks so much for the words of encouragement! I'm working on it!

 

[5dwarves]

Wow.....can you put any more tears in my eyes. You described me to a "T". I'm still working on the "feeling guilty" attitude of mine. I have to keep telling myself, my oldest is just as deserving because of all the attention Piper was getting during the 7-8 years she was sick and back and forth from doctor to doctor, to blood works, hospitalizations. My youngest was just 1 year old at the time of transplant, being the one donating the kidney, I wasn't able to hold her for 6 weeks!

All the people on here are amazing! I pray nightly for all these families, and all the families that are not on these DisBoards. I wish that I had more time to reply to more posts.

I do have a question:
Are there hair dryers at GKTW? I'm really worried about my hair. I don't exactly have hair for a ponytail, and I think that I look awful in a baseball cap. LOL

I really admire you for being a living related donor. I was not a match for my son; his dad (my ex) was, but wouldn't donate. I have been told that it is almost rougher on the donor than on the recipient because the healthy donor is losing something and going through a trauma, while the sick recipient is gaining something and feeling better for the first time in years. We were on the list for 17 months, waiting. I remember, as Adam got more and more ill that the nursing staff was more and more afraid to make eye contact with me, when were there for our weekly check ups. One OR nurse told me she didn't want to meet me before the surgery, because she usually worked on adult patients not peds, and had a son the same age. She was afraid it would make it too personal and emotional for her. I was more than aware that the medical staff knew it was critical for Adam to get transplanted soon, and I am so grateful to the family who decided to donate their child's organs while in the midst of the lowest moment of their life. It is truly an amazing gift.

One child's illness definitely does impact the other children. There are sacrifices to be made by everyone, to include time with mom. A few years ago my youngest, Nathan, came to me with tear filled eyes and asked me when he was going to have to have his surgery. He didn't realize that it wasn't a normal part of life, and was worried about the future. I reassured him that he wouldn't have to have a transplant like Adam did, and now he understands more. All my kids also understood while we were at GKTW that this was a special thing for Adam first, then everyone else second, because Adam had so many needles (blood work and IV's) and because Adam felt so bad all the time. They were never forgotten by anyone though and were treated very well at all the parks and GKTW as the siblings of the wish child.

I hate to admit it, but I don't remember anything about the hair dryers. I think there may have been one in the hall bath closest to the Master Bedroom and I think I vaguely remember that I didn't have to pack mine as a result, but I don't remember for sure. I also don't remember if there was one mounted on the wall like you see in hotels. You could call GKTW and ask them.

 

[Somer]

Just a little update, Jozlynn's been sick for a few weeks with just the regular cold, then flu, just as soon as she got better she got sick again. Then she got pink eye, so we took her in to our regular pediatrician just to get some eye drops....so I thought. She ended up in the hospital with test after test. We kept hearing "possible heart attack." Anyways, the tests came back ok and we came back home yesterday, we are just supposed to watch for certain signs. I guess it's better to be safe than sorry, we're just glad she's ok. Hopefully she'll be back to herself soon!

 

[BeckySob]

I really admire you for being a living related donor. I was not a match for my son; his dad (my ex) was, but wouldn't donate. I have been told that it is almost rougher on the donor than on the recipient because the healthy donor is losing something and going through a trauma, while the sick recipient is gaining something and feeling better for the first time in years. We were on the list for 17 months, waiting. I remember, as Adam got more and more ill that the nursing staff was more and more afraid to make eye contact with me, when were there for our weekly check ups. One OR nurse told me she didn't want to meet me before the surgery, because she usually worked on adult patients not peds, and had a son the same age. She was afraid it would make it too personal and emotional for her. I was more than aware that the medical staff knew it was critical for Adam to get transplanted soon, and I am so grateful to the family who decided to donate their child's organs while in the midst of the lowest moment of their life. It is truly an amazing gift.

One child's illness definitely does impact the other children. There are sacrifices to be made by everyone, to include time with mom. A few years ago my youngest, Nathan, came to me with tear filled eyes and asked me when he was going to have to have his surgery. He didn't realize that it wasn't a normal part of life, and was worried about the future. I reassured him that he wouldn't have to have a transplant like Adam did, and now he understands more. All my kids also understood while we were at GKTW that this was a special thing for Adam first, then everyone else second, because Adam had so many needles (blood work and IV's) and because Adam felt so bad all the time. They were never forgotten by anyone though and were treated very well at all the parks and GKTW as the siblings of the wish child.

I hate to admit it, but I don't remember anything about the hair dryers. I think there may have been one in the hall bath closest to the Master Bedroom and I think I vaguely remember that I didn't have to pack mine as a result, but I don't remember for sure. I also don't remember if there was one mounted on the wall like you see in hotels. You could call GKTW and ask them.

I just can't even imagine a father refusing to save his son? UGH, I'm getting sick to my stomache. Honestly, I was petrified, had doubts, but in the end, I said to myself.......How can you not do it? I'm her mother! It's my duty! If I could do it again, I would! Piper was lucky because both me and her dad were matches. So....if her kidney decides to fail, she'll always have her dads kidney. Her brother who is 13 is already saying that he would do it too. I was released from the hospital the day after the surgery, and Piper was in for a whole week. I was sore, yes, but, I don't like all the fuss over me. In fact, when I would come to see Piper, some of the nurses couldn't believe that I was her mom, the "donor" up and walking around. Walking slowly of course. ha ha Like I said, I'd do it again in a heartbeat. For anyone. I wish everyone would think like that.

I hope Adam is doing well these days? Those 17 months must've been nerve-racking.

 

[AmandaSparks730]

This is a sad day indeed.

Oh my gosh!! I am so sorry.

Tell your family I am really sorry!!!!

We're all sad, but, what can you do?

But thanks for the hugs

Amandasparks730,

That is so sad. Sending you hugs!!

Diane

Thank you.

 

[Soon2B4]

I just can't even imagine a father refusing to save his son? UGH, I'm getting sick to my stomach. Honestly, I was petrified, had doubts, but in the end, I said to myself.......How can you not do it? I'm her mother! It's my duty!

You said what I was thinking! It actually made me cry to think that someone wouldn't give a kidney to their own child! I am sorry if I am out of line in saying that, but when Aidan had cancer, I would have done anything I could to make him better. If he needed bone marrow, I would have been fighting with my DH to be first in line to get tested for a match! I even had family and friends volunteering if it came to that. I know bone marrow is different than an organ, but still. Sorry, I am done and sorry if I offended anyone!

 

[queengonzo]

Well we got some amazing news today. Aidan has been excepted into the Baylor Our Children's House Feeding Program. It's an intense 8-5, five day a week feeding program for FOUR-Five Weeks. We have been waiting to get in since November. If he learns to feed then this fall he could attend a special school for communications and such. He must feed on his own however to get in. We got rid of the Trach, now we need to get him eating.

Will keep y'all posted and I haven't forgotten to finish our trip report. Life has been a little busy lately, and I'm using spare time to be a better Father and Husband.

CONGRATULATIONS!!!!

we actually got evaluated in march 2007 and we were perfect canidates for the program (where you ended up staying there day and night for like 4+ weeks) BUT there was 2 draw back....1. i was PREGNANT and 2. daddy was being deployed to IRAQ for a year....and we live in SAN ANTONIO and it is in DALLAS!! so, it has been put on the BACK BACK burner for now....i guess once the kids get older (joshua our baby is 19m old), we might go that route....or we can just continue to do it here!! i have a friend of ours that went thru the program and her daughter was the YOUNGEST to go thru th program nad be successful!! i think she was about 18 months old or so....she is now 4 years old!! anyway, GOOD LUCK on this because it is VERY exciting!!

let us know how it goes!!!

 

[Corrine 1973]

You said what I was thinking! It actually made me cry to think that someone wouldn't give a kidney to their own child! I am sorry if I am out of line in saying that, but when Aidan had cancer, I would have done anything I could to make him better. If he needed bone marrow, I would have been fighting with my DH to be first in line to get tested for a match! I even had family and friends volunteering if it came to that. I know bone marrow is different than an organ, but still. Sorry, I am done and sorry if I offended anyone!

No offense taken. I agree with you ten fold.

Nothing to do with my pre- wish trip but I know there will be those here who will understand. A close friend of mine's son was born with a heart condition. He was due to have a surgery in March but it was cancelled because they feared he would not survive the surgery. My friend has just been notified that her son will need a heart transplant. This poor little boy has already had 3 surgeries and is not yet 4. I would appriciate everyone keeping him in their thoughts so that he to will be able to go on a wish trip.

Thanks for your time.

 

[queengonzo]

Just a little update, Jozlynn's been sick for a few weeks with just the regular cold, then flu, just as soon as she got better she got sick again. Then she got pink eye, so we took her in to our regular pediatrician just to get some eye drops....so I thought. She ended up in the hospital with test after test. We kept hearing "possible heart attack." Anyways, the tests came back ok and we came back home yesterday, we are just supposed to watch for certain signs. I guess it's better to be safe than sorry, we're just glad she's ok. Hopefully she'll be back to herself soon!

wow, how scary! my son also has a CHD called TAPVR....i can't imagine how i would feel if i heard the words POSSIBLE HEART ATTACK!! i hope she feels better SOON!!!

i don't know what is going on buy my whole FAMILY has been ill for 2 months now and we are on our 2ND round of PINK EYE too!!! what is with that?? my baby and my 6 year have had it!

GOD BLESS!!!