This past Sunday, our family returned from a week-long trip to sunny California. It was a wonderful vacation!
We visited San Diego for just over 2 days, and then Anaheim for an additional 3 days. Our objective – theme parks. Sea World, the San Diego Zoo, Disneyland and Disney’s California Adventure Park were on the menu.
Anyone who’s done this type of trip knows that all this stuff involves a LOT of walking… So how does that affect a person with Fibrodysplasia Ossificans Progressiva? Honestly, I wasn’t sure what problems our Miranda, who is 6 years old, might have. Her back, ribcage, shoulders and elbows are all restricted by FOP bone, which should by rights diminish her trunk strength and presumably lead to less walking endurance. We contemplated getting a wheelchair for Miss M to use if she got tired, but considered and decided to forgo it. I’m happy to tell you that as it turned out, we never once needed it. Miranda was like the proverbial “Energizer Bunny”, and just kept going and going and going…
On Sunday, March 20, we flew from Vancouver to Los Angeles. Our flight was late in the day; we arrived around 9:30 PM, and then had to pick up our rental car and drive to our hotel – result was bed-time around 11:30 PM (yikes). It was a bit rainy the next morning, but started to clear as we drove south to San Diego. The drive was only 2.5 hours or so, but we were all pretty tired from the night before, so just took it easy the rest of the day and hung out at a park after checking in to our hotel.
The next day was gorgeous and sunny – a perfect day for Sea World. Through the course of the day, we walked over every square millimetre of the park and took in everything there was to offer, from the dolphin and orca shows to the penguin and polar bear displays to the sea otters.
Here are Miranda and Owen with a polar bear in the background…
At close to the end of the day, we found ourselves at the playground/midway area. Miranda saw a “bouncy castle” type of attraction, and of course wanted to go jumping in it. I felt bad about this, but Pete and I had to put the kibosh on that idea and tell her she couldn’t do it. We know from unfortunate experience that if she falls in one of those things, she can’t get up again without assistance, and there’s also a high risk of crashing into other kids while jumping. When we told Miranda no, she screwed up her little face and burst into a storm of disappointed tears. Luckily, however, we were close to some midway-style games, so I told her I’d pay for her to play a couple – that made her feel better. For one game, I had to ask the attendant’s permission to let Miranda stand on a bench to throw her softballs and try to get them in a coloured cup to win a prize. Miranda didn’t win, but I could see the attendant watching her and noting M’s obvious difficulties moving her arms. The result was that the attendant came and gave her a stuffy orca toy for her “good effort”. Miranda was SOOOO delighted! That little kindness really made her day. What a great memory, especially given how upset she had been over the bouncy thing.
We spent the next day at the San Diego Zoo. Again, we walked from one end of the place to the other and back again, and lots of criss-crossing in the middle, with nary a word of complain from Miranda (or her brother Owen, who is 9 years old). I guess the attractions of camels, leopards, gorillas, bonobos, polar bears, panda bears, zebras, elephants and more were just too much to be denied.
Here’s Miranda astride a giant tortoise statue at the zoo.
That evening, we drove up north to Anaheim. It had been a beautiful day, but we drove through a horrible rain storm. Yes, we’re Vancouverites and thus used to rain, but this was really something else… It poured BUCKETS. Still, we arrived safely and checked into our hotel – which was a stone’s throw from Disneyland.
The next morning, which was Thursday, we just crossed the street in front of our hotel, and there we were. Miranda and Owen were SO excited! The kids were raring to go, but we had had a good tip from a friend of ours, which was to go to Disney’s “City Hall” and tell them about Miranda’s FOP so as to obtain a “disability pass” for the rides. The pass enables the whole family to bypass the regular lines and enter most rides at the exit, thereby relieving the necessity to stand in long, crowded (and thus dangerous and tiring, for someone with FOP) queues. What an excellent tip this was… We obtained such a pass, and were able to pass by the long lines at many of the attractions.
We spent 2 days at Disneyland, and while there, did just about everything, including the Teacup ride, the Flying Dumbos, “It’s a Small World”, the Mark Twain Paddlewheel Steamer, Mickey and Minnie’s houses, the Haunted Mansion, the Pirates of the Carribean ride, and so much more. Miranda was also delighted to get her face painted, and to buy an awesome pink Minnie Mouse sorcerer/princess hat.
Here we have Miranda’s fabulous face and hat!
On the evening of the second day in Anaheim, we went back to our hotel and met up at the restaurant with our friend Stacie Miller, who had given us the useful tip about the disability pass. Stacie has FOP, and is 34 years old and lives in Anaheim. It was so terrific to meet with Stacie and her mom! They were lovely people. Needless to say, we had lots of stories and experiences to share with each other. It was also great for me to learn that Stacie, despite being quite physically affected by FOP, has a strong zest for life, and is a university student with ambitions. While I believe a cure or treatment for FOP will be discovered early enough to benefit Miranda, I can’t guarantee that will happen, and so it gives me great relief to see adults with FOP who don’t let physical restrictions get in the way of leading interesting and enjoyable lives. Stacie Miller, you rock and I’m so glad we met.
I love this photo – Miranda and Stacie, two new “Friends with FOP”.
Finally, the last full day of our vacation was Saturday. We had thought about going to Universal Studios in LA, but decided to forgo it in favour of Disney’s California Adventure Park – which was ALSO right across the street. I’m proud to tell you that our Miranda, along with her brother, bravely did the “Tower of Terror” ride – an elevator which dashes up a tower and then PLUNGES down multiple times!!! If was scary as he*l, but those kids did it. In addition to that, there were countless other rides which we also went on, plus the Aladdin stage show and much more.
We got up early the next day, drove to Los Angeles, and then flew to Vancouver. We were back home with our kitty cats by about 3 PM.
Phew… It really was an incredible trip, and I’m SO glad we had no FOP-related garbage to deal with – no trips, no falls, no traumas, no flare-ups and lots of energy. I think Miranda will happily remember this trip for a long time (as will Pete, Owen and I).