That's right. A place you can only go to if you have been told there is nothing else they can do and to make the best of what time you have.
I say it was amazing, however, I can also say it is a very harsh awakening to the reality of our situation. I live day to day in a fog of denial about what is affecting Kamiyah. It has become a way of living and we get accustomed to the looks, the stares, the episodes that don't allow her to shower alone, the fact that driving will never be an option for her, and swimming is out of the question (she thinks she is a fish). I never realized that these obstacles could be gone because a community of other people are abnormal too. Falling and dropping your food in the dining hall is expected and handled as if it never happened. At GKTW, these problems don't exist, no one stares, the outdoor pool is heated so she can swim freely, and the carousel has a strap that prevents her from falling off the mythical pony she has always wanted to ride.
While at Disney world a person in line got mad that we were moved to the front of every line. She snarked, "they are lucky." Before we left home we were told by multiple people how lucky we are.
The truth is I would trade my spot in line for Kamiyah to be healthy. I would swap our all-expense- paid-vacation to wake up every day not worrying about how Kamiyah would ever function if I were to pass away. Trading this magical trip for all the days I have spent in hospitals begging for an answer would happen in a heartbeat if it were an option.
But guess what?!? It's not. When I get off of that ride and go back home the seriousness of Kamiyah's situation will be the same. Her medical expenses will pile up on my desk and the concern of her future will continue to be on my shoulders.
You can call us many things... strong, brave, amazing, grateful, and mighty. "Lucky", however, is not one of them.
Our trip to Kamiyah. Magical. The trip to us...bittersweet and beautiful. I would never ever ever call our trip "lucky."
And neither should anyone else.