Hey gang ~
I was reading Eeyore's Mom's trip report and she mentioned DisSigns as a place she used to make books and shirts for her son't MAW trip. Does anyone have any idea what that is and how I would get to it?
Thanks!
Misty
Hi everyone! We are a future wish family. My son, age 3, has hypoplastic left heart and tricuspid atresia. Our doctor in St Louis just referred us to MAW and finished the referral. I guess a wish-granter will be contacting us in a few weeks.
Erm, what else? My son just joined our family. He is from China and my husband returned 2/3 with him. He will have open heart surgery this spring and we hope to do our wish trip next year around this time. Sam cannot be in cold weather at all - must be inside if the temps are under 55. So, we need to be careful about when we go if we want to do anything at all at night (mini-golfing, etc).
I can't wait! I love reading all the info about everyone's trips. Our local MAW said they do not provide transportation to the airport, so we will need to go and pay for parking as well. She also said that very rarely are they able to give people anything extra for food or spending money. So, it's probably good that we have a year to save for this trip!!!
Mary
www dot oneblessedfamily dot com slash blog
DH - Doug
DD - Lydia (7 - a. 11/06 Nanjing, China)
DD - Gwen (5 - bio daughter)
DS - Sam (3 - a. 1/08 Changzhou, China)
DD - Phoebe (11 weeks - bio)
Hello everybody. I haven't had a chance to read through all the posts. My youngest son was referred to MAW. He has a heart condition- right now, thanks to the 12 pills he takes, he is stable and feels pretty good. You would never know he has a heart condition by looking at him. Unfortunately, that could all change and he could go into heart failure tomorrow. It has been a difficult year for him- he started having seizures, plus he is getting old enough now ( 9) that emotionally this is all getting hard for him. So we agreed this was the right time for a wish. He wants either a Disney Cruise or a trip to Disneyland. We save our money like crazy to take the family on vacations ( we just went on a cruise last summer and we are saving for another one December of '09- and we are hopefully going to DL this Summer). We asked him if he was sure that he didn't want something different and he said, " No, when I am at Disney, it is the one time I forget about it all." Can't argue with that. For some reason, he has no interest in WDW.
Anyway, the process has just started. We met with his pediatrician today for a check up before he filled out the paperwork. Once I got home, all I want to do is crawl in a ball and cry! Of course, I am hiding all this from my son. I logically know he has a life threatening condition. But, except for giving him a handful of pills twice a day, he seems so normal. I guess sometimes I like to stick my head in the sand. I think part of me was naively hoping he would say, " I don't consider Nathan to have a life threatening condition." Instead, when I was asking about his future and the seizures, he said, " His heart is what you need to worry about with his future."
Has anybody else ever felt this way? I am trying to get over it and feel excited. Now that the process has started, can anybody tell me what to expect?
Thanks for listening.
Hello everybody. I haven't had a chance to read through all the posts. My youngest son was referred to MAW. He has a heart condition- right now, thanks to the 12 pills he takes, he is stable and feels pretty good. You would never know he has a heart condition by looking at him. Unfortunately, that could all change and he could go into heart failure tomorrow. It has been a difficult year for him- he started having seizures, plus he is getting old enough now ( 9) that emotionally this is all getting hard for him. So we agreed this was the right time for a wish. He wants either a Disney Cruise or a trip to Disneyland. We save our money like crazy to take the family on vacations ( we just went on a cruise last summer and we are saving for another one December of '09- and we are hopefully going to DL this Summer). We asked him if he was sure that he didn't want something different and he said, " No, when I am at Disney, it is the one time I forget about it all." Can't argue with that. For some reason, he has no interest in WDW.
Anyway, the process has just started. We met with his pediatrician today for a check up before he filled out the paperwork. Once I got home, all I want to do is crawl in a ball and cry! Of course, I am hiding all this from my son. I logically know he has a life threatening condition. But, except for giving him a handful of pills twice a day, he seems so normal. I guess sometimes I like to stick my head in the sand. I think part of me was naively hoping he would say, " I don't consider Nathan to have a life threatening condition." Instead, when I was asking about his future and the seizures, he said, " His heart is what you need to worry about with his future."
Has anybody else ever felt this way? I am trying to get over it and feel excited. Now that the process has started, can anybody tell me what to expect?
Thanks for listening.
Hi. We have our dates set to have our wish trip for my ds who will be 4 years old on the 11th of March.. We are going to WDW Sep 22-27th. Our first trip out of our home state of California with our kids. We are going on a disney cruise at the end of May that was my special trip for my ds that I planned a year back before MAW. We are a one income family so we had to really save for the cruise. MAW was going to help but said he was to young to wish a out of the united states trip to Mexico. Then we were going to go to DL which is closer to us but we just went at the end of January before his open heart surgery so MAW suggested WDW and we are thrilled! When I first got the referall from MAW I cryed all night thinking it was the end for my son till I called them the next day. They explained that it was for kids with life threating problems or kids that also over come it. My ds had SVT(high heart rate over 300) when I was 38 weeks pregnant. Then was born with a enlarged heart. Got over both conditions at the age of 2. Then was found to have a heart tumor. We thought the tumor can be removed since it was first on the outside of the heart. He went in for open heart surgery on Feb 22 and found the tumor to be non cancerous but now it is on the inside of the heart and cant be removed. His only option is for a heart transplant if it grows and gets worst. He is a very happy and healthy kid if you look at him. People dont know how serious it is unless I tell them. I hope people dont look at us when we go to WDW like he isnt sick. Sorry this post is so long but need to get this out. I am grateful to MAW but never thougt I would be granted a wish for my ds. A scary and happy time for us.
Maybe your docs just don't have a lot of experience with it? Glad you called and got to enjoy the trip! To be frank, I am hoping this trip brings us all back together. The stress has been very very hard on all of us and we could really use it. We lost so much - no normal pregnancy, no normal birth, no "normal" baby (what's that anywayI put off calling MAW myself but finally did it. Interestingly enough, even though ds has three terminal illnesses, noone had bothered recommending them to us. So I felt really guilty since none of our medical community had said anything about him qualifying but I knew we as a family needed something. I really understand how so many families with sick kids ended up divorcing. The stress we go under can be so overwhelming. A trip like this can really help build back a relationship too.
Definitely read them!! I have learned SO much reading the awesome trip reorts. I feel like I have to do one too, just so I can pass on my thanks for all the great info. I probably will although I have no idea how to start! lolIf you haven't had the chance...go and read the wish trip reports, they will help you a lot!
Aww, the memories are cute. I hope they are all good ones! WDW has so much more to do, and the village so wonderful, it would be great if you guys could visit. But of course you don't want to push your son if you think he won't like it.Nathan has not officially made his wish yet. I know his doctor filled out all of the paperwork on Friday. I have no idea how long the process will take. We have tried to encourage him to do WDW- I did show him the WDW website and even GKTW website but he is absolutely against it. He has some problems with his memory ( he has trouble getting info from short term to long term- but once it is in long term, it is there )so the unknown/unfamiliar really scares him. We have been to DL enough that it feels like home to him ( he only wants to go to DL if he can stay in the new "dream suite"-lol! I've told him that I don't even think that is possible!). When we went on our cruise last year, he was scared to death at first. He did not want to go at all- even after years of dreaming and planning! But once we went, he absolutely loved it. It even made enough of an impression for much of the trip to get to his long term memory- even though some of his memories didn't actually happen! He has this whole story about ordering room service and they messed up the order, but the french fries were great and the mac and cheese was horrible, etc. Funny thing is- none of that happened! We ordered room service one time and he was asleep already! I figure, as long as his memories are good ones, what does it really matter if they are true! He also has this "memory" from when he was allowed to play t-ball when he was younger. He "recalls" making a triple play- all by himself! ( He did assist in a double play one time). I told his brothers if he wants to remember himself as the greatest t-ball player ever, so be it!
Awesome!!Our wish volunteers came over last night!!![]()
They were two super nice ladies and they brought a ton of loot for both kids, which I thought was really nice. I was a little worried about them coming with something for DD (wish child) only. They asked where DD would like to go and she said "I see Din-eze" which of course means Disney.
We really want to go the second week of December because my sister and parents want to go too and my sister's work schedule only allows her to be off at certain times (she's a teacher). But we still had to give them three dates.
So now it's just a waiting game, right? It's all out of our hands I guess. I'm not a good waiter!
Whatever, I'm excited!!!
Take care everyone!
Misty![]()
Good luck with everything LeeLee. It must be so crazy in your house! Good to hear that Braeton is doing better and I'll send some vibes for your hubby.Hi! Everyone!
Yay!1 Misty! Now the ball is rolling!!!![]()
Haven't been on in a while and will have to go back to try to catch up. Hope all is doing o.k. 's just been busy as usual @ here. My DH is not doing very good right now. Dialysis is not cleaning right now and he is holding a lot of fluid right now. That is a little unusual for him right now. Of course after 7 years of Dialysis I understand that unusual is usual for us!!!Braeton is actually doing better. The boys school is having a Hoe Down tomorrow and he is a little upset because his "partner" is a teacher!! (1 of his assistants that help him through the day. The school will not give him his own, they just use different ones through the day
) But he is all excited because he gets to be in it!
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We close on our house the 28th so we are trying to slow down where I can stay home and pack!!! And hopefully I can finish my report before this Sep!!![]()