Jadon Burks what do you plan to do NEXT…
As we prepare to embark upon our greatest “Dance in the Rain” adventure yet I can’t help but think about the timing. God’s timing is always better than ours, I just wish it was easier to recognize.
Jadon is heading to Walt Disney World and the plans have been in the works for over two years. The first time we spoke to Make A Wish Foundation was early 2012 and the plan was for them to grant his wish in September of that year. Spring of 2012 still stands as the darkest part of this SMA storm… so far. Jadon was very unstable and had major episodes on a regular basis with 10 of them nearly ending our journey. We were scared and confused and “knew” we didn’t have much time.
When Make A Wish granted Jadon the wish of his dreams we struggled to figure out what that wish would be. Our only criteria was that it would make his eyes light up. We looked for things that would not require us to travel as we were truly scared to leave the comfort of our medical strong hold we call home. Everything we came up with just didn’t seem right and we kept coming back to the magic of Disney World. Jadon loves so many of the characters.
We communicate with Jadon through his eyes. Closing his eyes means “No” and looking up means “Yes”. It isn’t a perfect system when he doesn’t feel like participating but there is always the tell tale sign of the “Happy Belly”. When his belly starts bouncing with excitement there is no question of his approval. When we asked him if he wanted to go see the “real” Woody and Buzz Lightyear he nearly bounced himself right out of his chair.
So here we go.
We are loading up the Family Truckster and heading cross country, but instead of the Family Truckster we are doing it Cousin Eddie style…in an RV. Make A Wish has rented an RV for us to travel in. The advantage of traveling by RV is that there will not be the need to unload the vehicle and take all of Jadon’s equipment into a hotel room. When we pull into our site at night everything will already be set up for treatments. It seems like a great plan.
Once we get to Florida we will be staying at a “Storybook resort…where children with life-threatening illnesses and their families are treated to week long, cost-free fantasy vacations.” This amazing place is called Give Kids the World. It appears it may be a struggle to drag ourselves away from the resort in order to visit the theme parks. This place looks awesome.
The excitement is really building now and we can feel the magic surrounding us. Jadon’s Wish Granters and several friends came over the other night to wish him a safe and exciting trip. That was the night we really, really started to get excited. I truly wish we could say we weren’t nervous but that would be a lie, in fact we’re shittin’ bricks. See how nervous I am…I know I shouldn’t use language like that and I apologize…we’re shittin’ rocks.
However, there are a whole lot less rocks than there would have been two years ago. We didn’t know if Jadon would make it to the fall of 2012 and the trip was postponed so Jadon could have Tracheostomy surgery. He would not have been recovered in time for the trip and therefore it was cancelled. He is more than recovered now and he is truly thriving. Life is better now than it was that crazy dark spring 2 years ago. We see now, what we thought was being lost was actually simply being reworked, redirected, and made a whole lot better.
Please pray for us. Please pray for safe travels and that Jadon will have the time of his life.
We are just so excited for you. Charlie’s MAW trip to GKTW and Disney truly was a once in a lifetime wondrous, incredible, unexplainable experience. We can’t wait to see all your photos and hear all about the adventures!
Much love from the Sykora Clan
I. Have. Goosies. So many memories to be made on this trip. Soak them in, savor them up, and let go of the fear…at least for bit. God knew the perfect time was now. Prayers starting now that you would feel His hand in all of this, from beginning to end.
You guys all so deserve this trip. I hope it is all and more than you are hoping and praying for. Be safe and send lots of pictures!
HAVE FUN BURKS FAMILY!! MAW is amazing and can’t think of anyone (family) that deserves this more then you guys!!! Cherish every moment – as you will be so amazed!!!! ENJOY!!
Pingback: Trip of a Lifetime – Make A Wish | Jadon's Hope Blog