Having a child with needs that are different than what one would expect or anticipate is challenging both in execution and acceptance. Our road with our almost six year old daughter has been nothing other than the opposite of what we had thought it would be during the time we were pregnant. When Addison was just six months old, an infectious disease doctor at the Cleveland Clinic told us to prepare ourselves to not celebrate her first birthday. Obviously they didn’t know that she would far exceed their predicted life expectancy.
In June of 2013, Addison was granted a Wish through Make-A-Wish Central New York. Her wish was to be a carefree princess at Disney World where she would have the chance to be a free spirited kid and not a medically fragile kid. In October of 2013, our family traveled to Orlando to fulfill her Wish. The partnerships between Make-A-Wish and Disney as well as other entities in the Orlando area are precisely what made Addison’s Wish come true. Disney provided our family with a 3-Day Park Hopper Ticket to the Disney Parks. Additionally, Disney provided our family with a “Magic Genie Pass”. The Genie from Aladdin is the “mascot” of all Disney related wishes. Our Magic Genie Pass provided our family with the optimal Disney experience by allowing us to easily access character meet-n-greets and rides. Given that our daughter has a tracheostomy, is oxygen dependent, is solely fed via g-tube, is legally blind, wheelchair bound and non-verbal this pass made it possible for our family to see and experience as much of the parks as possible in the 3 days we were there.
Disney treated Addison like a royal princess and made our entire family forget about doctors appointments, twice a week platelet and red blood transfusions, and those things that make our lives vastly different than “normal”. On our second day in Orlando we loaded up rental van and traveled to Magic Kingdom. We had no idea what to expect with regard to what it would take to load up our two children as well as our portable oxygen concentrator, oxygen tanks and all the other medical supplies needed to be in the park for over 12 hours. It literally took us 25 minutes just to start the trek to the Ticket and Transportation Center. We started feeling defeated and the idea of entering the park seemed daunting. We asked a security officer in the parking lot for directions on where to go to get to Magic Kingdom. She very politely steered us in the right direction and then proceeded to tell us that she was amazed by our family’s dedication to giving our children the opportunity to visit Disney after watching us spend so much time loading up for our day in the park. This compliment was just the fuel we needed to forge on, thank you to that officer.
Once inside Magic Kingdom, the magic of Disney sparkled before our eyes. Our children were carefree in a way that they had never been before, it is indescribable. Our most magical moment came that evening when we went to Ariel’s grotto. Addison and Anya both LOVE Ariel and at the Bibbidi Bobbidi Boutique, Addison was transformed into human Ariel and Anya was transformed into mermaid Ariel. We waited just a minute to step foot into Ariel’s grotto and there was one family in front of us finishing their visit with the coveted Ariel. Our girls waited patiently as the anticipation for meeting Ariel mounted, she was right there before our very eyes! As the family ahead began to exit the grotto Ariel bounced down from her shell, asked her assistant to come close to her and she whispered something in her ear. At the time I had no idea what she said. Ariel’s visit was complete with “jellyfish fist-pumping”, “Eskimo kisses”, pure innocent laughter, mermaid posed pictures and a 25 minute uninterrupted blissful meeting with Ariel. As we exited her grotto I wiped away my tears of joy as I profusely thanked Ariel for the length of time she spent with our family and for the memories she helped us create. She responded that it was completely her pleasure and that before we came up to meet her she had told her assistant Allison to not let any other families enter her grotto until our meeting was complete no matter how long we stayed. Nearly 8 months later my girls still give one another jellyfish fist-pumps and we speak of our love for Ariel on a nearly daily basis.
The cast members at Disney World are incredible and the smiles, hugs, love and magic that was given to us throughout our visit truly made Addison’s Wish come true.
One of the silver linings in our journey with Addison has been making friendships with families, doctors, caretakers, organizations and companies, like Disney and Make-A-Wish, who face the same concerns, hopes, and dreams for our children. We are extremely blessed to have developed a life-long relationship with Disney and Make-A-Wish. The assistance and support provided by both of these entities was part of the bridge to making the Addison’s Wish come true. The support that Disney and Make-A-Wish provides for the Upstate New York community makes the lives of our special children exceptional.
Right now, through August 10, 2014, our Make-A-Wish Central New York chapter is accepting donations through the “Walk on the Wild Side” event. To learn more about this event and giving opportunity, please visit our fundraising page for more details.
Contributed by Stephanie M. Irwin
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