Far too often we find ourselves without adequate words to express our sincere gratitude for the blessings we have received throughout this storm called SMA. And Jadon’s Make-A-Wish trip is no exception. How do you say thank you for the trip of a lifetime???
To tell Make A-Wish Foundation they are amazing is like telling a movie star they are attractive. They already know. But no matter many times they have heard it before, we must say it again; Make A-Wish Foundation – you are completely, incredibly, fantastically, wonderfully amazing. Thank You, thank you, thank you for making our little guy’s eyes beam and his wish come true!
Once again we are completely humbled by the blessings that surround us. Our trip to Disney World was definitely something we could not have done on our own. The magic of Disney would have been out of reach without the help of Make A-Wish and Give Kids the World.
Generally being hesitant to venture even across town, we knew it would take us WAY out of our comfort zone to travel to Florida. Like 1,250 miles out of our comfort zone. We reluctantly planned the trip knowing there would be a chance we would have to cancel it at any time. And given the track record leading up to the trip, we knew we may have to cancel a month or even the day before. That’s just what SMA does. In fact there were days leading up to the trip that our fear nearly convinced us to do just that. With our M.O. “Dance in the Rain,” ringing in our ears, we didn’t cancel. Instead we loaded up the RV, hit the road… and dance we did……
Buckle up my friend, you are about to embark upon a great adventure.
The RV proved to be far more convenient and much safer for Jadon to travel half way across the country. Despite the drive being long and seeming to take F-O-R-E-V-E-R, we were grateful each night when we reached our destination there was no need to unload the vehicle. Jadon’s equipment was set up and in place for treatments. Huge relief!
When we finally arrived at Give Kids the World on Sunday, we could tell we were in for an amazing stay. How could you not when you check into the House of Hearts, eat meals at the Gingerbread House, walk along the Avenue of Angels , get ice cream at the Ice Cream Palace starting at 7:30 AM and have a giant rabbit named Mayor Clayton and his bunny-bride, Ms. Merry govern the entire place?!? Whoa!
This 70-acre storybook resort was designed and is reserved exclusively for families like ours on a Wish Trip. The staff and volunteers are nothing short of outstanding! Their main goal – help families, if only for a brief moment, forget the weight of the world they feel bearing down on their shoulders and create memories that will last a lifetime. Jadon even has his own star lovingly placed by the Star Fairy in the Castle of Miracles Star Tower where it will remain forever.
While it was difficult to drag ourselves away from the fun and excitement of Give Kids the World, we were on a mission – meet Woody and Buzz Lightyear! So off to Disney World we went.
Disney World truly is a magical place, the magnitude of which we never fully understood until this trip. Upon seeing that Jadon was a “Wish Kid” (he got to wear his very own special, VIP button every day!), Disney employees went out of their way to ensure we were having a magical time and would whisk us away to side entrances so Jadon could have one-on-one time with each of the characters. His eyes would light up, happy belly bouncing like crazy and we never tired of seeing that happen. And little sis, Gracyn? Well, she thought all the characters were quite comical and would squeal in delight and play peek-a-boo with each one.
Our whirlwind 3-day pass tour of Disney began with Disney’s Hollywood Studios. The day was hot and humid. For a kiddo that has difficulty regulating his body temperature, at times the heat was a bit much for Jadon to handle. His heart-rate raced like crazy, so high at times we had to duck into buildings just to find air conditioning and cool him down. But that did not stop him from having an awesome time! Our very first stop….the whole point of coming on this trip…..the pinnacle reason behind Jadon’s wish…..he got to meet Woody and Buzz Lightyear!! Emotions overcame us as we walked into the room and saw Jadon’s face light up with pure and utter excitement. At that point, all the stress and worry of coming on the trip was worth it just to see the joy on Jadon’s face.
Disney day 2 led us to Epcot and even more character visits. At one point, Jadon even garnered the attention of Mickey, Minnie and Goofy….all at the same time!!!
A friend suggested we eat at Coral Reef because she thought Jadon would love watching the fish swim by in the GARGANTUAS fish tank. Right she was!! Jadon was mesmerized by the schools of fish, turtle, stingrays and shark that so effortlessly swam by our table as we ate.
After lunch, we once again ventured out of our comfort zone and took Jadon on a ride. Yep, that’s right, a ride. The Seas with Nemo and Friends had him completely captivated. Since the weather was so pleasant and Jadon (and we) were having such a great time, we decided to take a trip around the world. We started off in Canada, made our way to the United Kingdom, strolled into France and frolicked through Morocco. By the time we made it to Japan, both kiddos were out cold. So much for soaking up a little bit of culture! We continued through an American Adventure and Italy. By the time we made our way into Germany, the thunder started to roll in and we knew we would have to hustle. Albeit that our M.O. is to “Dance in the Rain”, we simply can’t get any of Jadon’s equipment wet. So we literally ran through China, Norway and Mexico. I’m sure it was a sight to see. Thank goodness we didn’t experience any passport issues! We hedged our bets and decided to head straight for the vehicle instead of stopping at the VIP lounge set aside for Make-A-Wish families. We had to beat the rain. And we made it….just in time. As the last piece of equipment was being loaded into the RV, the skies opened up and it didn’t stop! Whew!
By the time day 3 was upon us, we decided to deviate from our original plan of hanging around Give Kids the World and having our dear, close friends that live in Venice, FL come up for lunch. Knowing we were so close to the ocean, there was just no way around it – Bug HAD to see the ocean! So we loaded up for a drive down to Sarasota. For those of you that know us, doing things at the spur of the moment just doesn’t happen. Our life revolves around a very consistent schedule and going outside of this creates a small bit of anxiety. By the time we made it to Sarasota and had Jadon settled beneath a palm tree on the beach overlooking the ocean, once again we knew this was the right decision to make. Tears welled up in our eyes as we stepped back to soak the moment in. Jadon was at the ocean. He was feeling the breeze on his face. He was smelling the salty ocean air. He was relaxing in the shade of a palm tree. He was watching boats sail by. He was happy. And we, well we were ecstatic.
For our last day at Disney we went to where it all started, Magic Kingdom. We opted to arrive later in the day because we planned on staying into the evening so Jadon could enjoy the Light Parade and Fireworks. It was here that Jadon got kissed multiple times by Princesses (several of which left red lipstick marks on his forehead and cheeks) and got Cinderella’s number. Our Bug is quite the Lady’s Man.
On Friday, we planned on going to Sea World so Jadon could feed the dolphins. Remember that special, VIP Wish Kid button….that would have made it all happen. Unfortunately, the rain did not cooperate.
We patiently waited in the parking lot for 2 hours hoping the rain would stop but it didn’t. You could tell Jadon was pretty disappointed which make our hearts hurt. So we went back to Give Kids the World and decided a Pirates and Princess Party was in order. After that, a good-night tuck-in from Mayor Clayton himself!
I know we’ve already said this, but this was TRULY a trip of a lifetime. To see Jadon thoroughly and unequivocally enjoy himself, to just be a kid and “do” kid things made our hearts leap for joy. And to see him gazing at the ocean reminded us of how small we really are. It reminded us that we are not in control of this life and that HOPE truly does endure. We wrote off anything like this on August 25, 2009 when the doctor told us there was no treatment and no cure for SMA. We stopped dreaming of a future filled with things like sitting under palm trees, smelling the salty water or going on family vacations. We gave up on so much that day, but hope still remained. That is why every single blessing that has come our way since has truly mattered to us. It matters more than anything. We will never take another day for granted, we will never underestimate the kindness of others and we will never, ever underestimate the power and love of God.
Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.
-1 Corinthians 13:7