A Magical Vacation

 We recently got home from spending five days at Disney World. We drove down last Friday and came back Tuesday night. The four of us in the car together, in a hotel room together, at the parks together. Plus there was food and drink available around the clock in the lobby right off our room. So once the kids went down, we could sneak out to have a glass of champagne and a cupcake together. It was a special few days. We got to meet characters, see shows, ride roller coasters, drink champagne.

We knew the kids would have a blast. James is about to turn four (he PROUDLY wore his birthday boy pin the whole time and made sure the characters took notice) and Mary Adair is five. They love a bunch of the Disney movies (have you ever heard of Frozen?) and TV shows. I was a little nervous about James on the roller coasters though. Mary Adair is typically up for anything, but James is the one who gets scared during movies and turned off by spicy food. Somehow this led me to believe that he would be skittish on the rides.

Not only were they the perfect ages for the trip, but in many ways this was the right time for me to go as well. With a scooter I can get around pretty well. With a bit of help, I can get on and off rides if I’m careful. My neck is weaker, but it is still strong enough to handle the rides that Disney has to offer. I’m not sure if that will be the case in a year’s time, but it is true today. Last December we went to the Bahamas and spent a couple of days at a waterpark. I snuck off a few times to go down the big slides. I was nervous at first climbing the steps and sitting down at the top of the slide, but after doing it once, I realized I could handle it. I also realized whenever the next time came, that might no longer be the case. So I did it over and over again. I loved sitting at the kiddie pool watching the kids play on the jungle gym’s etc., but any excuse I had, I wandered past the big slides and took one more ride. A year later I don’t think I could do it. I don’t think climbing the steps would be a good idea, and I don’t see how I could sit myself down. In the grand scheme of things, it doesn’t bother me at all, but I am glad that I took the opportunity when I could.

In some ways this Disney trip was the same. As long as I was careful, and used the scooter to get around, I could still be a participant and not just an observer.  So the first time James and Mary Adair rode a roller coaster I was sitting there with them. James and I in one row and Mary Adair and Cara in the next. As we went down the first hill I couldn’t quite tell how James was reacting. I heard him making noises, but I couldn’t initially see the expression on his face. When I leaned over to get a better look, he was grinning from ear to ear, squealing with delight. His expression didn’t change through the rest of the ride. When we pulled into the station and got off the ride, I asked Cara how Mary Adair did. Mary Adair proudly exclaimed that she had her hands up the whole time. After one ride, they were hooked. We were a roller coaster family. The four of us. Me included.

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Going into the trip I had not considered what it would have meant if James or Mary Adair decided they were too little for the roller coasters. It may have meant that we never would have had the chance to experience that thrill together. Again, in the grand scheme of things that wouldn’t have been a big deal, but once it clicked, it was incredibly special to me.  The four of us riding over and over and over again. We debated whether we liked Snow White or Big Thunder Mountain more and went back and forth from ride to ride using our fast passes and disability return pass to navigate the lines. One time I would ride with Mary Adair and James with Cara and then we would switch. One time we would sit in the front, and then one time in the back. Each and every time James grinned from ear to ear. Each and every time Mary Adair held her hands up to the sky. Each and every time I got to be the annoying dad yelling “Hi Hoooo” in their ears over and over again.


Of course ALS always manages to present complications. Through a couple of days we thought that complication was having to figure out how to get me off the Winnie the Pooh ride when it stopped working. But that wasn’t it. At the end of a fun day at Hollywood Studios, I fell getting off of the Buzz Lightyear ride. Since my arms don’t really work, my forehead took the full blow. As I lay facedown on the ground, unable to speak because it knocked the wind out of me, and with blood seeping from a gash in my head, Cara was left to figure out if I was okay while also dealing with the kids. One more impossibly hard situation that got thrown in her face. There is never really a break. I don’t remember much from the incident, but I know how incredibly scary and stressful it must have been for her. After an ambulance ride to the hospital, a CT scan, a handful of stitches, and two new stuffed animals and lots of candy for the kids,  we shrugged it off and continued our trip. I still am feeling the effects of banging my head and ribs, but we still managed to get in a couple more great days at the parks.  It meant that Cara got to take them on Splash Mountain by herself, but otherwise we pressed on. Together.

Afterwards we were kicking ourselves, because if I had just asked her to give me a hand as I got off the ride, maybe we would’ve come through the trip unscathed. It’s a fine line between being safe and letting stuff get in our way. For the most part I think they are pretty good at it. Sure I would have preferred not to have fallen, but still we spent our days riding roller coasters, nights at the parks wrapped up with the kids in our laps watching the fireworks, and for five days we laughed and played and slept and ate and loved together. It was a magical trip.IMG_4548IMG_4563IMG_4606IMG_4602


One thought on “A Magical Vacation

  1. Thank you very much for sharing this.Hang in there!We are with you in our thoughts.Hans and Christian

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