Faith's MAW "Super" Wish Trip! 3/2-3/8

[FaithsWish]

First off - Hello! I have been lurking for a few days. My name is Allison, my husband is James and we have 4 kids. The oldest three have left home and are all in college. James was a Navy submariner for 20 years and he retired two years ago. Adjusting to civilian life has been a challenge, but it has been nice be done with all the moves and to finally have a place to call home.

We found out a couple weeks ago that my 11 year old daughter will be granted a wish through Make a Wish.

Faith is quite a little trooper. She survived a right hemisphere stroke, she has 18p- syndrome, FMF syndrome, autism, and in the past few months she has also added autoimmune pancreatic failure, gastroparesis, and declining kidney function. She functions on about a 4-5 year old level. She is in a wheelchair part time.

Faith is an amazing kid. She loves superheroes. Captain America, Iron Man, Spiderman! She also loves Teenage Mutant Ninja Turtles, Scooby Doo and Choo Choo Soul. She believes in dressing "fancy" every day! She loves to wear ties, necklaces, bracelets, sunglasses and baseball hats. Which leads to her other love....

Baseball! She absolutely loves watching baseball. More specifically our local minor league team. We go to all the games we can and she really enjoys talking to the players after the game and asking for their signatures. Her fascination with baseball led us to become a host family for young players. It has been a fantastic experience for all of us.

Faith's Wish Granters came over on Sunday. Faith told them her wish....to go to Australia. I think it is because her favorite Scooby Doo movie is set in Australia. So I had to be a meanyhead mom and veto that wish. She simply doesn't have the stamina for that long of a trip! So she thought for a while and came up with another true wish....she wants to go to Florida and get the Superhero's autographs!!

We have not heard back from MAW as to any details, but I'm thinking it will include GKTW. We have asked for early spring to go.

There is so much to try and plan for and so much I hope we are able to do! I know I am going to have lots of questions! I just wanted to take a moment to say hello and introduce myself and Faith before I start bombarding y'all with questions.

 

[Jmariab64]

I wish you everything magical for your trip! Have a great time!

 

[moe10378]

Sounds to me like Faith is the real Superhero!!!!! You guys will have the time of your lives!! Ask away!!!! This place is full of lots of amazing info!!!! I look forward to following along!!

 

[FaithsWish]

Even though we don't have dates yet, I figured we should start doing some planning. Step one:



This will be Faith and my first time to WDW and hub has not been since 1985! Goodness, so much to think about!

 

[FaithsWish]

Since I don't have much to report yet on this PTR, I thought I would just give some updates on Faith!

In my introduction I mentioned how much Faith loves baseball and our local minor league team. A few of her favorite players have made it into the majors. This past weekend her all time favorite player, Steven Souza with the Nationals, gave us field passes and tickets to the game!

This was Faith's first MLB game and she has so much fun!

But for Faith the absolute best part was spending time with "her guys" before the game. She was in heaven being able to hang out again with Steven, Taylor Hill, Michael Taylor and Aaron Barrett.

We didn't actually make it all the way through the game, we made to the 4th inning, she was just too tired and overwhelmed from the excitement.

 

[FaithsWish]

We still don't have dates for Faith's MAW trip, but we have been reading all the awesome trip reports and dreaming.

Faith is starting to add some requests of things she would like to do after looking at some books. Naturally, they are all things that require reservations!

Thought I would post up a picture of Faith with the fun surprise goodies that her Wish Granters brought over when they were here to ask about her wish.

I'm hoping to have more to post soon!

 

[CheshireKate]

Congrats on your daughters wish trip! She sounds like an awesome kid!!! My son also wished to go to Disney World; we leave in 3 weeks!

Hope you guys have an amazing trip!!

 

[FaithsWish]

Congrats on your daughters wish trip! She sounds like an awesome kid!!! My son also wished to go to Disney World; we leave in 3 weeks!

Hope you guys have an amazing trip!!

Hi! Nice to "meet" you! Three weeks? Oh my goodness, he must be so excited! I hope y'all have an amazing time!

 

[FaithsWish]

Today we walked with our local Make A Wish chapter in the 4th annual Walk For Wishes. We had so much fun being around other Wish Families. Some amazing stories were shared.

 

[FaithsWish]

We heard from Faith's Wish Granters today. No dates yet, but we did get a couple small tidbits of news.

I'm not sure if this is just our chapter or not, but a new policy was put in place that allows children who are under 21, but not physically at home due to being away at college to be counted in the wish! So that means that Faith's two older brothers will be included!

Then they gave us just enough information to get us even more excited for Faith.... they are working on some surprises to make sure she gets lots of character autographs since that was her wish - to get superhero autographs.

I can't wait to see her little face light up!

 

[FaithsWish]

I am trying to come up with some alternatives to BBB.

We ordered the vacation planning DVD from WDW so Faith could have video to watch. Naturally one of the very first things she spots is BBB. Now, all she talks about is how she wants to be turned into a princess.

That is great, and I want her trip to be as magical as possible. BUT....

Due to her 18p- she has a very distended stomach and it is almost impossible to find off the rack dresses, or anything that buttons, snaps or zips that fits her. Now add in that her feet are extremely wide and often quite swollen with edema. We have never found a pair of "dressy" shoes she can wear. She also has extreme sensory issues. She does not like her hair or face touched.

Do you see my problems with BBB?

So I am trying to get creative to make her Princess still happen and I am open to any ideas y'all might have!

What is done at Twinkle Hope’s La Ti Da Royal Spa?

Does anyone know if it is possible to paint Crocs? I think I could make them silver sparkly.

Anyone know of a source of sensory and size friendly Princess outfits? I am thinking of something like soft bike shorts with satin skirt paired with a Tshirt that is made to look like dress top. Am I dreaming here?

Then maybe we could make some magic happen at the Royal Spa. Nails? A tiara placed?

Thank you for any help or ideas!

 

[poppinspal]

I stumbled across your PTR while killing a little time and was thinking about the dress problem.


Have you considered a tutu for Faith? It's not exactly a princess costume but she can wear shorts or pants under it so the material won't be touching her legs and let me tell even at 32 when I put on a tutu for a race or Halloween party it always makes me happy. Plus I can think of lots of ways to make the tutu more princess like.

 

[FaithsWish]

I stumbled across your PTR while killing a little time and was thinking about the dress problem.


Have you considered a tutu for Faith? It's not exactly a princess costume but she can wear shorts or pants under it so the material won't be touching her legs and let me tell even at 32 when I put on a tutu for a race or Halloween party it always makes me happy. Plus I can think of lots of ways to make the tutu more princess like.

Thank you so much for the suggestion. Who doesn't love a tutu???

I actually think I have hit on a great solution on Etsy. It's a T-shirt top that has appliques to make it look like Snow Whites top and a soft yellow tutu. Then I'll find some yellow bike shorts. My only hitch is she doesn't make them quite big enough, so I am messaging her to see if she can make it a bit bigger for a special princess.

Then I'll add in the some special sparkly crocs and

POOF!

A sensory friendly special Snow White!

The hardest part is going to be not showing her beforehand!

 

[poppinspal]

I make tutus all the time, they are very easy to make bigger so I'm sure they'll be able to work something out for you!


I'm going to shoot you a private message.

 

[FaithsWish]

Just a quick update...

We have a Snow White dress! Actually a tshirt with appliques to look like Snow Whites top and soft tutu with some bike shorts under!

So blessed to have found a mom on Etsy who will custom make this to fit Faith's shape. No squeezing her in or awkward, too tight in the tummy fit.

 

[Friend of a Mouse]

I'm so excited for your trip! I used to be a Cast Member and now grant wshes for the Missouri MAW chapter. I volunteered at GKTW about 7 years ago when I was in Orlando. It truly is a magical place. I will answer any questions I can, but it has been awhile since I have been there.

It can take some time to get the dates, I think my first kiddo it took between 3 weeks and a month to get everything put together for the dates since they have to talk to the doctors and national office. I'm sure you'll be getting your dates any day now!

 

[FaithsWish]

It can take some time to get the dates, I think my first kiddo it took between 3 weeks and a month to get everything put together for the dates since they have to talk to the doctors and national office. I'm sure you'll be getting your dates any day now!

Hello! Nice to meet you Friend of a Mouse!

We are trying to be patient....but....it's so hard!

I'm a planner and I can't make plans without dates. For the moment I am just doing what I can, like showing Faith pictures in books and online to help her become familiar with what to expect.

I feel awkward calling her Wish Granters because I don't want to bug them or seem like we are expecting too much.

 

[FaithsWish]

Still not much to report here on my PTR!

I did have a question about the JTA. From the reading I have been doing on it, it seems like at rope drop, people run to get signed up for it. Literally run.

I'm wondering if there is any way for Wish Kids, who simply do not have the ability to run at RD to get signed up beforehand?

JTA is slowly becoming one of her "must-do" items. I'm just not sure how it works if a child can't get there fast enough and all the spots are taken before we get there.

Any ideas?

 

[Betty Rohrer]

do not know about JTA for sure but MAW pass does do a lot for you and would ask at parent meeting at GKTW when you arrive as that one can not be FP.

 

[FaithsWish]

A few days ago Faith came home from school and told me about a girl on her bus who loved Frozen. She told me that she loved it all but didn't have an Elsa doll. Faith was pretty upset that this girl didn't have a doll so she went into her room and brought out her singing Elsa doll and told me that she wanted to give this girl her Elsa doll because she would get to see Elsa in person so she didn't need the doll.

So she gave the doll away.

Faith's heart and kindness just blows me away sometimes.

So, we took her to Frozen on Ice this weekend.

It didn't go very well.

Faith got very sick right before intermission. We actually almost called for an ambulance to come get us. Her glucose levels tanked and we couldn't get them back up. Then she started vomiting. Poor girl got sick in every bathroom in Giant Center between our seats and our car.

She spent yesterday resting on the couch talking about how lucky she was that she got to see Snow White and Anna.

That she was the luckiest girl ever.

It's all in the perspective....

I think I am going to start an itinerary based on days of the week and working around the set plans of GKTW. Then once we get actual dates, I can start tweaking it.

Still waiting patiently.