We’re going to Disney World! This phrase is synonymous with excitement, joy, and anticipation for those lucky enough to have uttered it. For us, it is totally bittersweet: equal parts excitement and dread. I’m sure that raises a few eyebrows, so let me explain why…
Every year, the MPS society hosts a conference for families affected by an MPS disorder. It is a special time for us to come together, spend time with people we have built bonds with over the years since the diagnosis of our children to learn, to share in each other’s joys and sorrows that living this different life has brought our way.
We have never been to a family conference. Since diagnosis, I have always wanted to attend and finally be able to physically embrace all the truly amazing people who have helped me to survive this journey; the people who I turn to for advice, for comfort, and who know exactly how I feel without having to ever say it. These people, who I have never met, have become a second family to us and without them I would feel so alone on this path. Being able to afford to go has always been out of our reach. Living on one income means paying the bills, feeding the family, and not much else. We are comfortable, and happy but extras are just not in the cards.
I had known for quite some time that this year’s conference would be held at Disney World, as it is every five years. I dreamed of going; combining my deep love for all that is Disney and my love for my MPS family would be an absolute dream come, but I knew realistically this was not financially possible for us and put the thought of my head.
Fast forward to June of this year, and all the families were a buzz with excitement and planning for the conference and trip. In talking to my friend, Sandy, who was working hard to make the trip possible for her family, she mentioned doing a gofundme account to raise money to take Landon to the conference. It peaked my interest, but knowing that a Disney trip would be pricey, especially around Christmas time, I let it go. I also worried that people would be off put by fundraising to take Landon, as he did have a make a wish trip, and the last thing I ever wanted was for people to think we were ungrateful or expected anything from them.
The more talk I heard about the trip, the more I wanted to find a way to make this happen for Landon. This past year has been rough, and there has been lots of noticeable progression in him. It has been heartbreaking to see, and as much as it hurt to admit it to myself, I knew that this was going to be a “now or never” deal for him. The next time this conference would be held in our special place would not be for another 5 years, and in my heart I know we don’t have that long to wait. If Landon is still with us in five years, it would be highly unlikely that he would be in a position to enjoy the trip. With Sandy’s urging (thank you so much, my amazing friend for the push: I don’t know how I could ever thank you) and knowing this was his chance, I took the leap and started the account.
To say that the success of the fundraising was overwhelming would be an understatement. We set the goal at $5,000, which would be enough to cover our flights, hotel, conference fees, and maybe some meals while we would be there. We reached our goal in 11 days. We received donation from family, friends, and complete strangers to make this dream a reality. I have never felt such deep gratitude or gratefulness. How could you ever appropriately thank someone for helping you to give your child something so special. Because of these people and their giving hearts, Landon will be able to not only experience the happiness and magic of Disney one more time, but he will also get to be a part of the conference: A place where he is accepted, understood, and celebrated for exactly who he is. He will be embraced by people who have loved him through a computer screen, through a phone, and in photos for years, but now it will be real. We will be with family in the happiest place on earth. I am teary eyed just typing that. I couldn’t accurately put into words how much that means to our family.
Since raising the money, we have been meticulously planning this special trip. I have spent countless hours making dining reservations, researching special experiences, character and crowd maps, and making perfect fast pass selections, all in an effort to make this trip as magical as it can possibly be for Landon. We will be having breakfast with Mary Poppins, who he has loved for the better part of his life, we will be going on a fireworks cruise with Pirates, having Dinner with the Beast at Be Our Guest, and having a very special night of dinner and fireworks in the Magic Kingdom with some of our fellow MPS families. The week will be filled with magic, excitement, and all the happiness that a trip to Disney World should be.
And here is where the bittersweetness comes into play. We are cramming all the magic possible into this special trip, because it will be the last time. We will see his face light up when he rides small world, for the last time. We will see the joy on his face when the characters he so loves and admires come to life before his eyes, for the last time. I will hold him close and see the wonder on his face as fireworks explode over Cinderella’s castle, for the last time. And there it is; for the last time. All the happiness of each of those moments will have the shadow of those four words behind them. To know we are planning anything for our 8-year-old son “for the last time,” is a heartache that is almost too painful to bear. It is unfair, it is devastating, but it is the reality we must face.
So while this trip will be bittersweet, and while I know that when we walk out of Magic Kingdom hand in hand for the last time, my eyes will be filled with tears and my heart will be heavy and in my throat, I will cry through an ear to ear smile. I will smile because I am so honored and forever grateful that we got to have a “for the last time” at all. Because of the wonderful, special people who so graciously gave, we will have this beautiful, magical memory to forever look back on and remember. And that is nothing but sweet.