Hudsyn's Make-a-Wish Trip to Walt Disney World
It’s cloudy, raining and freezing outside as I write this post at our home in Kansas City…and it makes me desperately want to go back to Orlando, FL where we found ourselves earlier this month on Hudsyn’s AMAZING Make-a-Wish Trip to Walt Disney World. Weather there was regularly in the 70s-80s…and sunny!
To cheer myself up, I thought I’d recap our stay at Give Kids the World Village, our time at each of the parks (Magic Kingdom, Universal Studios and Epcot Center), and our experience with the Make-a-Wish Foundation. We hope this provides knowledge to those who are getting ready for their Disney wish trip or who might want to go.
Make-a-Wish Missouri: Granting the Wish
It all started last spring (May 2018) when a colleague of mine asked if Hudsyn had ever been granted a wish through the Make-a-Wish Foundation. I responded: “I thought that was only for terminally ill children?”
She assured me it was for kids with any kind of chronic diagnoses, even if not life-threatening right now. With Hudsyn’s VNS surgery planned that fall, it felt like a good idea to apply. I honestly had no plans to travel anytime soon. For some reason, this new procedure felt more nerve-wracking than others. Maybe it was because we had fought it for so long, or maybe it was because it was taking place in her neck, right next to a major artery. I know you get this if you’re a special needs momma…but I’m going to put it out there anwyay:
We never know how long any of us will have with our children…life is never a guarantee. But, for those of us who care for chronically ill or medically complex kids, “that reality” lies just under the surface of normalcy every day.
That scary realtiy was why whenever someone mentioned or asked about her surgery, I’d find things to keep my mind occupied so I wouldn’t have to think about potential outcomes. One of those new distractions became the Make-a-Wish application and idea that we could take Hudsyn to the most magical place on earth…somewhere that didn’t involve all these appointments, therapies or discussion of her future.
As I began researching for our local Make-a-Wish contact, we were referred to Make-a-Wish Missouri & Kansas. I began reading more about the different experiences local kids have had and the amazing work this organization does to help children between the ages of 2.5 and 18 experience something they normally wouldn’t get to do. I filled out the online referral form and waited.
Pretty quickly, we were contacted by a local Wish Grantor, but because my business was going nuts (a good thing from my perspective), I kept forgetting to respond. We had to submit some extra documentation, get approvals/sign-off’s from her medical team and do a bunnnnch more paperwork. But, finally, in July, two wish grantors visited our house to let us know her wish had been granted AND to brainstorm ideas on what exactly she might want to do. They asked questions, dug deep on what interested Hudsyn the most and took a tour of her room. Due to her love of Minnie Mouse, princesses and all things associated with a girlie girl, it was decided that a 7-day, all expenses paid trip to Disney World might be the best wish she could have ever been granted!
They weren’t wrong.
Due to some hiccups with Hudsyn’s surgery getting moved to December (and wanting to give her ample recovery time), we chose to take the trip the first week of March 2019.
Give Kids The World Village
Make-a-Wish coordinates with a very special place in Orlando that was our “home away from home” while on our trip. When I first heard about Give Kids the World (GKTW), I thought it was basically just a place for us to stay - a collection of condos or something. I was completely wrong. This is an 84-acre resort, a few miles down the road from Magic Kingdom and the other parks. It has its own management staff and I was told is supported by over 200 volunteers a day. It has SO MUCH to do and offer all on its own. This place. Give Kids the World is exactly what it boasts. No child ever feels different or excluded. Everything is made for kids, especially those with physical disabilities. Hudsyn was able to ride every single ride and every building was built beyond the norm for accessibility. The pools were zero entry so her chair could just roll right in if needed! Countertops were lower and children were the focus and priority. Damek could have ice cream for BREAKFAST because the ice cream parlor opened at 7am…every. day. Shh, don’t tell anyone, but this momma might’ve also had ice cream every day while there.
I’m not going to do it true justice by writing about it, though, so be sure to watch Dan’s episode where he talks about our first day on the trip. You’ll see me getting emotional on the train ride. Ya’ll, I rarely cry. But, the amount of overwhelm…the relief…I had after finally getting to this incredible place and learning it really IS everything they described it to be, I couldn’t help myself. I bawled back there with Hudsyn as we all rode a train TOGETHER. We felt normal here. We were able to relax and hang out as a family for the first time ever on a vacation. It was easy…and that’s why I cried. Because, generally, it isn’t this easy to even walk down our street to a neighbor’s house for dinner…let alone take a trip across the country. We walked around this resort and people talked to Hudsyn, they didn’t ask about her disability or diagnosis. They ONLY focused on making sure she (and everyone else) was smiling.
Watching her ride that mechanical swing…was like watching her participate in her very first Christmas concert back at CCVI (Children’s Center for the Visually Impaired) when she was two. I remember that day back in 2012 like it was yesterday because it gave me hope she would someday participate in the community. Her smile lights up my heart and reminds me that right now…our world is pretty awesome.
TIP: GKTW has its own app. You’re encouraged to download it before your trip, which I highly recommend. Because the resort features its own activities and events each day, you can plan accordingly balancing time between the parks and the Village. It also gives you access to menus and the different hours for each food service. I also liked how it would alert me if an event was happening that day or if a location change happened at the last minute due to weather.
One of our favorite events was Halloween Night where the kids could dress up in costumes (we packed one for Damek), get their faces painted and GTKW volunteers showered them with candy and gifts. We were sad we missed the Winter Wonderland where Santa Claus shows up with all his holiday friends!
Disney! Magic Kingdom, Animal Kingdom & Epcot Center
That first night, we had dinner at GKTW and settled into our new space. Ashley had a pull out couch in the living room. This is also where Troy stayed when he visited for that first weekend. Every room has a TV, including the kids’ room. There are 5 beds total (pull-out couch, two twin beds in the kids’ room, King bed in the parents’ room and a twin fold-out trundle bed in the living room). The kids shared a room just off the largest master bathroom I’ve ever seen in a condo. It featured a jacuzzi tub and a roll-in shower that was excellent for getting everyone ready in each morning. This is also where the washer and dryer were located, which allowed us to pack super light for the trip. Both bathrooms had hair dryers, towels and soap/shampoo so none of that was packed either. GKTW arranged for Hudsyn’s bath chair to be there on our arrival and was exactly like the one we had at home (yes, we got to choose). We were also provided (at our choice) a Special Tomato stroller and an oxygen concentrator for the week at no charge. The stroller was a huge help at the parks because Damek needed a break from all the walking toward the end of each day.
Upon check-in at GTKW, we were given our selected amusement park tickets. We’d had a large array to choose from in how we wanted to spend the seven days in Orlando. We chose Disney for three days and Universal Studios for two days. Our immediate family was able to enjoy all parks and passes free of charge. Ashley and Troy had to purchase their own tickets. TIP: If you have extended family joining you, it might be a good idea to purchase tickets online or ahead of time, if you can, to avoid lines and excessive charges at the park.
You’ll see in the video, and as part of our ticket packages, Hudsyn was given a special “Genie Pass” which allowed us free parking, Fast Pass access to all the rides and just special treatment in general. One of our favorite conveniences at Magic Kingdom was the “Wish Lounge.” This was on Main Street in the same building as First Aid and near the Baby Station. They provide a clean, air-conditioned place to change Hudsyn; a quiet room to rest in and take a break from the sensory overload; and cold water for our water bottles.
TIP: Eat a healthy, large breakfast and put sunscreen on in the parking lot prior to entering the park. Take hats, sunglasses and water bottles to fill for the day. This will give you the strongest start to your first day. Because our meals were free at GKTW, we planned ahead and took snacks and water with us to avoid having to eat so much while in the park. However, Make-a-Wish did provide us with a $950 debit card we could use for anything except souvenirs. We were encouraged to use this for food while at the parks if we chose. We had to track all expenses, and we didn’t use it a ton, but it did come in handy a few times.
The only mishap we had that first day was while waiting in line, an elderly lady on a Rascal scooter rammed into Hudsyn’s wheelchair and nearly clipped her arm. We think she meant to hit the brake and instead hit the accelerator. I’m thankful no one was hurt, and the woman’s daughter felt terrible. Disney staff responded immediately and documented the incident just in case Hudsyn had any issues later. I’ve never seen Dan pick up a Rascal with one hand to remove it from Hudsyn’s chair so quickly! Daddy protective instincts are fierce. What was even more annoying was the lady had ample room to turn AWAY from Hudsyn’s chair before it happened and instead she just ran straight into her. This all happened right before our first ride of the day, so it was forgotten quickly but the adrenaline was running a little high as a result of the shock.
Even though Hudsyn’s Princess Day wasn’t scheduled until Tuesday, we decided to make a stop at Fairytale Hall in Magic Kingdom to scope out exactly how the setup would look for her big wish day. After all, this was the whole reason she was interested in Disney…the princesses! The week we were there, Princess Elena and Cinderella were the featured actors. There was no waiting with our Genie Pass and the room was dark with professional lighting and photographers. Hudsyn was given extra time with each princess. We were confident that Tuesday would go very smoothly and now she had TWO days with the princesses, which made her smile. The actors were INCREDIBLE. They took their time and really talked to each kiddo a good amount of time. There was one time Dan interrupted Damek and Cinderella shook her finger at Dan to make him wait for Damek to finish. Hudsyn, of course, can’t talk, but both Elena and Cinderella talked to her without even pausing. It was heartwarming and perfect.
We ran into Merida from the movie Brave later that afternoon. Damek asked if she was a pirate, which she found hilarious. Pooh and Tigger had a bouncing contest with Damek which Hudsyn found amusing.
TIP: Take advantage of the Memory Maker card they give you. Take it everywhere inside the Disney parks. This card allows all professional photographers the ability to transfer your personal photos onto a digital space that then is given to you for download later. I LOVED this feature because I could focus on the kids and not worry about taking pictures with my phone or camera.
Rides at Disney parks are incredibly accessible in most situations. This aspect (and the highly trained staff) are really what we believe set Disney apart from all the other parks and experiences. You can obtain a list of the fully accessible rides from anyone in the park concierge services…or be lazy like me and just look them up on Google while walking through the park. To save on the amount of “stuff” we were carrying and I had to keep track of, I also did this for all park maps. Disney has a great app you can also use while in the parks to help navigate, learn of on-site events (Parades, pop-up performances, etc) and even find discounts on food at the variety of restaurants inside the parks. The app also allowed us to view the professional photos that were taken with the Memory Maker card.
Damek’s favorite ride: Avatar at Animal Kingdom
Hudsyn’s favorite ride: Winnie the Pooh at Magic Kingdom
Dan’s favorite ride: Space Mountain and watching Damek experience his first roller coaster (which we told him was a rocket ship.)
Kacy’s favorite ride: Avatar - hands down the most amazing ride I’ve ever been on!
Day three was Universal Studios and everyone woke up with what I’m naming the “Disney hangover.” Our bodies were sore from all the walking on concrete; Damek was hoarse and had a low-grade fever (likely from putting his mouth on every handrail and object possible) and Hudsyn a little cranky. We began the day by eating, again, an amazingly large breakfast at GKTW Village…only this day we were accompanied by some special visitors…Star Wars characters! Watch the video to see Damek’s reaction to this…daddy was proud.
We also attended Miss Meri’s Tea Party which happened just before we were about to leave…so we stayed to learn some manners and meet more princesses! Hudsyn received gifts, a proper tea party table/setting and photos that were much more her speed. It worked out well, because while we were doing this, Dan was working with the kitchen staff to blend Hudsyn’s food (they have a Vitamix in their kitchen) because we didn’t want to pack her blender on the trip…another huge convenience that made life easy for us while there.
This was also the day we entered Hudsyn’s star in the Castle of Miracles at GKTW. If you’ve never heard of this, please watch the experience. I could spend all day in this space, admiring how many children GKTW has really impacted since 1986. Damek was particularly generous during the pillow-making activity as he gave Hudsyn HIS pillow and said he really wanted his sister to have two pillows. Aww:)
Universal Studios was more than familiar to Dan and I. We’d been there many times for Dan’s old flair bartending competitions at The Groove Nightclub, which is still there! It was bittersweet to visit, because he had stopped competing not long after Hudsyn was born (for obvious reasons). Getting our tickets/passes for the day was a bit more challenging than at Disney - we learned quickly the staff at Universal was NOT well trained for kids like Hudsyn…nor was the park designed well for her.
Our first challenge came when we realized, after the Minion and Shrek rides, there really wasn’t much more she could particpate in. Universal requires a LOT of transferring from a wheelchair to a seat/car. You must be able to do this on your own if you’re in a wheelchair…soooo, that eliminated her from 90% of the experiences there. Therefore, Hudsyn and I spent a lot of time just waiting for the rest of the family to be done riding rides. No fun for her.
The Harry Potter area of the park was neat, but after the “train ride” to Diagon Alley, we were told the elevator to get off the platform was out of order with no estimated time of repair. A large crowd had formed because several families with strollers were expecting to be able to avoid the three flights of stairs. I might’ve made a slight scene in asking how to get our 50lb daughter down three flights of stairs with her 60lb wheelchair. They stared at me blankly. To make matters even more pressing, she had a diaper that needed changing. Dan decided to physically lift her from her chair, carried her down the stairs while Troy and I carried all the stuff and her chair. We then had to walk another half mile to find the First Aid station so we could change her on a proper table. The paramedics inside were super nice and we were thankful for them. They mentioned the wand store (Olivander’s) had a neat show we could all watch. So, after trying Butter Beer for the first time (ummm, DELICIOUS and worth the $7.50), Hudsyn got to participate.
Damek and Dan really enjoyed the Escape from Gringotts ride and rode it EIGHT TIMES in a row.
The night ended with Damek’s favorite memory of the entire trip: Mayor Clayton tucking him in at the condo. His face was priceless!
The next day (Monday), Ashley, Hudsyn and I decided to stay at the condo and have a girls day to ourselves while Damek and Dan went back for a second day at Universal. TIP: Don’t be afraid to build in “down days.” I needed this as much as Hudsyn did. We relaxed, ate when we wanted and had a nice walk all over GTKW Village. We toured Mayor Clayton’s house and gardens; rode the Merry-Go-Round again and scouted out the Rockin’ Spa. Ashley also got really sick (we think from possible food poisoning) so spent most of the day in bed. Thankfully, her sickness only lasted 24 hours, and she was back and ready to go for Hudsyn’s big day on Tuesday.
Hudsyn’s Wish Day: Hair, Makeup & a Princess Photoshoot
Tuesday was Hudsyn’s special day. Damek continued to cough, so we had him wearing a mask to protect others (and himself) from more germs. It was raining that morning and a little chilly, so we took jackets. TIP: Just because it’s Florida, be sure to take a few pieces of warm clothing in case you get a rainy day. I was thankful I had jeans.
Damek had a little green monster (aka jealousy) and was misbehaving as we focused more attention on Hudsyn. TIP: Include your other kiddos even on the special day. Damek really wanted to be a princess also, so we allowed him to paint his nails, wear an extra “crown” and participate with her. This made him feel included and his attitude improved.
The Rockin’ Spa at GKTW was where we chose to have her hair and nails done for the day. It was totally free and she picked the nail colors she wanted (pink and purple, of course). The “Spa” is staffed mainly by volunteers and she had two teenage girls helping her. Before going to Disney, I’d contemplated taking her to the Bibbidi Bobbidi Boutique (Magic Kingdom) for her big day of hair and makeup. However, after learning the packages there START at $65, plus the time it would take to get her in and out of their super busy schedule, I decided against it. While the Rockin’ Spa was fun, I wasn’t satisfied with the hair design they chose. We are, after all, spoiled by an amazing nurse (Alicia) who has two girls of her own and does incredible things with Hudsyn’s hair even on normal days. So, after getting back to the condo, Ashley helped me give her proper princess hair for the day. We also put on some makeup from my bag and packed her dress (with jewelry) that we’d change her into once back at Magic Kingdom’s Wish Lounge.
My favorite part of the day was watching her face as others complimented her awesome Rapunzel gown and tiara (thanks to Make-a-Wish Missouri/Kansas for providing this) as we walked around the park. A new Cinderella and Elena were at Fairytale Hall that morning and although she didn’t smile a ton, I know she was enjoying every minute while there. She wanted to stay in her gown, so we spent the rest of the afternoon walking around, riding more rides and giving her a true Princess Day.
It became more chilly, so before heading to Epcot Center, we changed her into a Minnie Mouse sweatpant suit and hopped back on the Monorail. Epcot also wasn’t as accessible as Magic Kingdom, but we enjoyed the acquariums, a few rides (Finding Nemo was great) and a fireworks display before leaving. My favorite part of Epcot was the fully accessible, adult changing table in one of the family bathrooms there. We visited it more than a few times that day.
Leaving Give Kids the World
Our last day at GTKW featured Hudsyn learning where her star was placed at The Castle of Miracles. And, again, they overwhelmed us with their hospitality. There’s a separate, complimentary family villa where we could chill before heading out on our flight which wasn’t until 7pm that night (check out is 11am). So, after lunch, Damek and I visited the fully accessible playground while Dan and Hudsyn took a nap in the host villa. I didn’t want to leave this incredible place. It was, by far, the new standard for how we want to travel as a family. It gave us hope that we CAN travel as a family and have a great time.
Overall Travel Tips: Things We Learned
Prepare. There’s a TON of information you’re given ahead of time via Make-a-Wish and especially Give Kids the World. Read it all and watch all the prep videos as a family. They give packing tips, what to expect once in Orlando and even ideas on how to make the most of your stay. This was helpful for Damek, who is always inquisitive and wants to know what’s coming up next on any given day. It helped him feel somewhat in control while traveling - a luxury many kids don’t usually get since they aren’t making the decisions.
Plan for the worst. We hadn’t traveled with Hudsyn since she was five years old and that was out of the country to Panama for her last round of stem cells. The main difference in planning for that trip and this one was she had become bigger. What if she pooped on the plane - where would we change her? What if she got really sick - where would we take her for medical care? What if her G-tube came out and we didn’t have an extra one with us? So…we planned for all of these things. We gave a suppository the night before our flight; we put her medical team and care plan on a USB to take with us in case she had a medical emergency while down there and we carried extras of everything (including the G-tube). Thankfully, we had a very smooth trip/flight down and back…and no visits to a hospital or clinic were required.
Order the Big Stuff to Be There Upon Arrival. We had the opportunity to use a wheelchair accessible van without charge while there. This was a huge help. Do this. It allowed us the convenience of driving everyone together while in Orlando. And Give Kids the World made sure it was at the airport, waiting for us, upon landing and getting our luggage. We also had a bath chair, extra Special Tomato stroller and Oxygen waiting for us in our room. We didn’t have to carry/pack/ship these things as a result. We did carry a booster seat with us for Damek, but learned later we didn’t need it because the wheelchair van came with one I had forgotten I’d ordered in the paperwork.
Use Kids as Pack Mules. This might sound mean. But I promise, it’s essential if you have more than one child you’re traveling with. Be sure each child has a large backpack as their carry-on. Of course, give them things to do in said backpack, but also encourage them to be the family’s pack mule. Make it fun! That’s right, everyone helps carry stuff…everyone. Put extras you may need in the side or front pockets of the backpacks. We had extra face masks and hand sanitizer for the plane; barf bags, sunglasses, sunscreen and crayons. When we were walking through the airport, we loaded Hudsyn’s wheelchair with as much as it could hold and then made sure all large bags had wheels. We checked all large bags and then everyone had a backpack to trudge through the airport. It worked well.
Comfortable Shoes & Clothes are a MUST. On the days you’ll be at each theme park, do not wear flip flops. Do not wear sandals. Wear good, supportive tennis shoes and comfortable socks. Your feet and back will thank you later.
Purchase Extra Tickets Ahead of Time. If you have extended family joining you, it might be a good idea to purchase tickets online or ahead of time if you can to avoid lines and excessive charges at the park.
Packing for the Parks. Take one or two backpacks (for the parents) and be sure to use the lanyard they give you for all parks. The lanyard gave us the ability to keep Hudsyn’s Genie Pass and Memory Maker card handy at all times. When we went to Universal, I forgot it and ended up buying another one in a souvenir shop because we needed it. Backpack contained: sunscreen, hand sanitizer, Dan’s camera/vlogging equipment, water bottles, wallets, etc. Hudsyn’s backpack had diapers, chucks, wipes and an extra set of clothes. We also chose to take several small, plastic grocery sacks for dirty clothes/diapers that occurred during the day. That way they didn’t smell too much while transporting back to the condo that evening.
Walmart and Other Stores are Nearby. Upon arrival, we learned we forgot Hudsyn’s food scale. This is a very important tool in preparing her food each day for the Ketogenic Diet. No problem! We just hopped in our van and drove down to Walmart and purchased an inexpensive food scale with our GKTW debit card. While there, we also purchased some staples for the condo (snacks, water, sunscreen, etc). So don’t worry too much if you forget simple items. There are places nearby to solve this quickly and painlessly.