February 16, Nicholas's Make a Wish departure day, was a day pretty much two years in the making. On Valentine's Day 2018 we went in for his quarterly routine echo. On that day, just four months after starting his second hypertension medication, our cardiologist was encouraged by what seemed to be an improvement. That day, we began the path to seeking potential treatment for his heart instead of simply following advanced palliative care.
That entire story is another post for another time, but after deciding "to continue taking the next step" each time following another cath at Duke, an MRI to examine his heart (with a 3-D model printed), and a lot of communication with one of the country's leading pediatric Double Outlet Right Ventricle surgeons we suddenly found ourselves looking at the potential of a major, "high risk/high reward" open heart surgery to repair his heart. Feeling the weight of such a serious surgery upon us, and not knowing what the outcome would be, we finally decided to admit to ourselves that our son had a "progressive, degenerative or malignant condition that is placing his life in jeapordy," and apply to Make A Wish to grant his desire to experience Disney World.
That process was kicked off in October of 2018, but we learned that wish granting doesn't necessarily happen super quickly. For the remainder of 2018 we were in the interview process as Make A Wish checked with Nicholas's medical teams to confirm his illness and then talked with us about our family and how his medical condition affected our lives.
In early February of 2019 we learned that we moved to the next step...wish granters coming to the house to meet Nicholas (and the rest of us) and learn what Nicholas's biggest desire was. Leading up to the meeting, our boy had wavered between going to Hawaii in hopes of meeting Stitch ~ his very favorite character ~ or going to Disney. While I love Disney more than your average girl, I was secretly hoping for a Hawaiian destination...seeing the volcano on the big island is a bucket list item for me. In the end though his adrenaline junkie side won out and he said he wanted to go to Disney World.
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| our wish granters were awesome and came with a cake to commemorate the occasion 2/27/2019 |
Next came the wait to see if his wish would be granted (funded). Finally on June 11, the last day of the school year, four days after we returned from being in Boston for sixteen days for his surgery, we got the call. His wish was granted and it was time to decide when we'd be going. When our wish granters had come to the house we requested possible dates later in 2019, but Ian had blown through his vacation with our time in Boston, so we decided to postpone until early 2020...the fact there was a week with two days off school that spanned his birthday was icing on the cake!
The only thing left to do at that point was wait and let anticipation build!
Finally the big day arrived...
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| departure for Disney...of course Grandma was here to see us off! |
Mom had been in town to stay with the kids for one of our theatre date nights. She left when we did and it reminded us the only bummer of the trip...only immediate family is included. It would have been perfect if Grandma could have been part of our special trip.
Make A Wish thinks of everything, and I do mean EVERYTHING! Even our parking at the airport was covered...
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| arriving at the EZ Park |
Parents and Nat were excited with all smiles.
Apparently there had been too much excitement in the boy's room the night before...they all needed to catch a nap on the flight.
And yes, the big girls were there...they just found seats not as close to us and we missed the chance to get a photo before take off. We've never flown to Orlando before, it sure makes that trip faster! And the kids were delighted to see all the Disney/Universal/Sea World characters all over the airport.
Once through the secure area, we were warmly greeted by a representative of Give Kids the World village. Paula led us to the luggage collection area, pushed the cart and walked us to the rental car agency, all the while giving us the lowdown on Give Kids the World (GKTW). While Make A Wish (MAW) had specifically requested a 12 (or 15) passenger Transit like we drive at home, somehow the rental agency had none available. It took a considerable amount of time for the issue to be resolved, but that gave more time for us to chat with Paula. She and her husband volunteer as airport greeters for GKTW for most of the winter. I asked her about her connection to the village and she said that her twin granddaughters (both whom have since passed) had a genetic condition and were guests at GKTW through MAW over a decade ago. Paula and her husband have volunteered every year since. I quickly got the sense that once a villager, always a villager and had thoughts of our family returning to complete the circle one day. Those thoughts were interrupted though when our 15 passenger Chevy van was finally ready and we were headed out to experience the village for ourselves.
Give Kids the World is best summed up in a few paragraphs from their website.
"Give Kids The World Village is an 84-acre, nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families.
The Village and its community partners provide children and their families accommodations in fully-furnished villas, transportation, tickets to theme parks, meals, daily entertainment and much more.
Each year 27,000 children in the United States are diagnosed with a critical illness. Half of all children eligible for a wish through a partnering wish-granting organization choose to visit Central Florida and its collection of theme parks and other attractions.
Our goal, quite simply, is to provide everything these deserving families need to make their trip the vacation of a lifetime. Since 1986, more than 175,000 children and families have had their dreams fulfilled in a whimsical Village unlike any other place on earth."
They say their goal is to provide everything families need to make their trip the vacation of a lifetime.
They do not disappoint. While we did not take advantage of everything the village has to offer, we explored a good bit of it upon arrival that afternoon. There was an arcade, remote control boats to steer, the most impressive model train display I've ever seen (how did we not get any pictures of that?), a bowling lane, pool tables, and miniature golf.
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| each hole had some dino surprise...this guy blew water spray at us as we walked by |
The dining hall, presided over by Mickey, provided numerous choices at each meal...well...we guess they did at lunch...we were always in the parks during that time. There was an evening theme night (baked potato bar, taco night, Sunday roast chicken...) a pizza bar, rotisserie chicken and sides from Boston Market, a salad bar and a chicken finger/fries bar every night.
Volunteers were there to help with trays (Ian and I both laughed about how this would have been helpful on those early trips to China with three, four and five kids under the age of 7 in tow) as we got our food. Then we sat and every need was catered to...forget your fork? A volunteer will go get it.
Need a drink refill? Just look up and someone will be by to grab your glass.
Need extra whipped cream for your ice cream? Yeah, you guessed it.
And did I mention that the ice cream parlor was open from 7am until 10pm?
Yes, you really can have ice cream for breakfast if you want.
(And yes, over the course of the week, some of mine did...you only get the vacation of a lifetime once in a lifetime, right?)
One of the most special things about GKTW though is the Castle of Miracles. Inside, if you are 18 or under, you can visit Buttons the squirrel at his magic tree and receive a handmade pillow.
Guests of all ages can drop a coin the wishing well (coins provided of course) and hear various responses from inhabitants of the well.
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| the "N twins" dropped coin after coin to hear all the messages |
One important part of your visit is to stop by the Castle of Miracles to receive and decorate your star.
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| Nicholas drawing on his star while siblings watch and admire all the other stars. |
Finally Nicholas was ready to turn his star in to Stellar the Star fairy. Stellar is responsible for securing stars a location on the ceiling of the castle or location in the Wish Tower.
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| he colored the points and wrote Nick on the star...none of us call him that, but whateves...it's his wish |
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| stars on the ceiling of the wish tower |
At this point after all the anticipation of the day, our travel, and exploring most of the GKTW village, we were pretty tired. But we couldn't head back to the villa just yet. Sunday nights find the Hoppening Place inside Towne Hall transformed into the world's largest Candy Land game.
We played Candy Land themed carnival games, enjoyed freshly made cotton candy, frosted (and ate) cupcakes and made our way though the life size Candy Land board where brightly colored carpet squares were the path and we were the pawns.
When we'd had all the fun (and sugar) we could handle, we grabbed some silly prizes on the way out the door.
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| my first set of twins...not "too cool" in 7th grade to let loose and have a little fun |
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| my "N twins" |
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| perhaps nearly 14 puts one at a place where they take themselves too seriously...D was happy to pose on his own though! |
We walked back to the villa where we quickly pulled out the couch and murphy beds in the living room for the boys and got everyone else settled in for the night.
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| the last time our living room had a couch...we just left the beds for the rest of the week |
After all, the next day was a BIG one!
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