It was a perfect warm Arizona evening when the Make-a-Wish Arizona team came to our home with balloons and card that said “We are here to grant Lily’s wish!!”.
Our daughter, Lily, was born with a rare genetic disorder named CDKL5 deficiency disorder (CDD). She is entirely affected leaving her fully dependent on caregivers for the entirety of her life. While she was never given a “life expectancy”, she has been placed on palliative care since she was fairly young.
When Lily was 10 years old she was nominated by her Pediatric Neurologist, who understood Lily’s diagnosis best, and felt Lily was deserving of a Wish.
Lily is non-verbal so didn’t know exactly what Lily wanted for her wish and her Wish team understood the assignment. Our family sat and talked about things that made Lily happy and we all agreed that warm water, calm beaches and all things Disney were things that soothed our girl.
We also were a family of 5 at that time and knew there would be a lot of restrictions on travel for us, with Lily being completely wheelchair bound. After lots of brainstorming we came to the conclusion a Disney Cruise would meet our needs best and did it ever.
Our cruise was in 2013 and our kids were all pretty young at that time but ask ANY of them and they will tell you it was the best week of their life!
We were picked up in a limo and treated like celebrities through the airport. We flew to Orlando and stayed in the airport hotel and in the morning were shuttled on a wheelchair accessible shuttle off to the port where we got on the Disney Dream and went on the best adventure!
The time spent on the ship was as relaxing as it was adventurous. We had a pirate night, lazy pool deck naps, hot tub fun, and our room had a veranda where we were able to sit on the deck- and watch the world fade away.
We ate ice cream at 10pm and ran all around the ship on a scavenger hunt. We’d run into characters accidentally and Lily got the most excited when we met Daisy Duck. We had no idea she loved her so much!
My favorite part of the whole vacation was at Castaway Cay. My husband took the kids snorkeling and Lily and I sat back in a beach lounger and soaked up the quiet warmth. I felt this overwhelming amount of love for Lily and for our entire family and I felt this sense of knowing no matter how hard things can be, we are so fortunate to be Lily’s parents.
One night we were even given a formal invitation to a VIP event with none other than THE Mickey Mouse! We were able to meet and chat with other Make-a-Wish families. The vacation was absolutely perfect from start to finish and something we that will always be imprinted on all our hearts. Make-A-Wish truly understands the power of quality of life.
After a wonderful vacation, we went back to life, however little did we know that Make-A-Wish would re-enter our lives in a powerful way.