Disney Here We Come!

Almost a year ago I requested that Parker get to make a wish for a trip to Disney World through Make a Wish. I had always thought that the organization was for children with fatal diseases; but, I learned recently that other kids with Mowat Wilson Syndrome and other syndromes and conditions were able to make wishes too. I wasn’t just pursuing a free trip; I had been trying to plan a Disney trip on my own and finding difficulty finding the right accommodations. We do not travel light nor are we easy customers. We have lots of requirements to make a trip enjoyable and meet all Parker’s needs. I had been looking for a room with 2 rooms so that we can set up Parker’s bed in a separate room from ours. He makes so much noise while he sleeps and moves around so much that we have trouble getting enough sleep when he sleeps in the same room as us. There is nothing worse than being on a trip and hoping to get home soon so we can finally sleep. Why travel if we are just miserable? I found some rooms that were big enough with a large price tag too!

The next issue was finding a room where we can fit Parker’s twin air bed that we use with his bed tent that we adapted for him. We can and do move furniture around to set up his bed, but we need enough room for our redecorating. If we have a hotel with at least 2 rooms, we usually are fine to get his bed set up. The size and cost are always a trick, but, it seems to be even more of a trick going to Disney. Just as I decided to give up and try again some time in the future, I learned that there is a place for families with special needs kids near Disney. This place is called Give Kids the World and it has everything you might need and more. They are roomy, accessible, and equipped with laundry appliances and a kitchen. When I inquired about this place, I found out that it is only used for families through Make a Wish. That is when I decided to apply. In June, Parker made his wish and shortly after that, his wish was granted. We decided that the best time to go would be the spring when it is not too hot and not cold. Parker’s doctor was insistent that we not go when it is hot and said she couldn’t sign permission for him to go in the summer. Apparently, Orlando is very hot in the summer.

So, I just spoke with Make a Wish and they are now booking our plane tickets and we are only days away from going. Now it’s time to get excited! It is also time to start pulling out stuff we need to take, swim attire, shorts, sandals, sunscreen, bed, bed tent and on and on. I just got a letter from the pediatrician asking to allow us to take Parker’s Pediasure and applesauce for meds on board the plane. I checked to make sure Parker’s VNS card is in my wallet as he can’t go through the security scanners with the VNS. We will pull out his lightweight adaptive car seat to take as it weighs much less than the regular car seat, and our equipment guy has promised to loan us a wheelchair for the trip as the new chair will not get to us on time for our trip.

Disney World here we come!

This post was written prior to our leaving, but, I had no time to get it posted before we left. I decided to post this anyway and start composing my piece about our trip. Please pardon my tardiness. My life is not my own nor is my time. My follow up post on the actual trip will follow real soon, I think.

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About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
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3 Responses to Disney Here We Come!

  1. Jenn tolisano says:

    Hi! We live about 1 and a half hours from Disney. And my son Kyle has MWS how long are you going to be in town?

    • Lori Linn says:

      Hi Jenn, We are already back home. I wrote this 2 weeks before going and never had even 15 minutes to get it posted before we left. We hope to get back there again as we had lots of fun. It sounds like there are at least a couple of other families not too far from Disney. Maybe we can arrange a meet up next time. We would love that!!

  2. So glad you were able to go! Make a Wish is a great organization.

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