Christmas day. 2015. End of Leg 1 of our two week vacation.
We all sit around the living room of my in-law’s house, opening presents, sharing the last moments of togetherness before we head out on the next leg of our journey. The day before, we spent Christmas Eve packing up and we’re ready to go. We had packed two of the biggest suitcases we own. We needed to pack for two climate for two completely different types of vacations. Texas is always cold, though this year it was unseasonably warm, and our next leg was going to be on a boat and we weren’t sure if we were going to see modern amenities, though it turns out, they were unexpectedly well equipped. Not knowing that going in, though, required two gigantic suitcases of clothes for various weather conditions, therapy equipment needed on a daily basis, daily supplements for Maggie, enough pull ups in size 5 for the week on the cruise, books, and a few toys that make Maggie happy, not to mention our stuff. We had a lot of stuff!
Our flight to Florida was uneventful, thankfully. It was the first time we were flying with Maggie on something other than a direct flight, having to make a quick stop in Dallas, before continuing on to Orlando, but she was a trooper. We jumped on a golf cart reserved for the disabled and cruised over to make our connecting flight with no problem. When I asked if we could get on the cart, there was initial hesitation on the part of the driver. I wonder if he was in a rush, or if he saw Maggie, and thought, “yeah, they qualify.” Whatever it was, it was convenient to be able to ride through one of my least favorite airports – it’s just so big – especially since Maggie would not have walked(what felt like) the mile and half between gates we had to go. She didn’t fall asleep on the connecting flight, but was in good spirits the whole way. It was late in Orlando but Maggie was very excited to see her grandparents. My brother Steve’s family had already arrive and he was there to help us with bags and greet Maggie, she was very happy to see him too. As luck would have it, Maggie’s best friend/babysitter/aide/nanny Shelly arrived at the same time we did. So for Maggie things were good. But it was 11:00pm, so it was right to bed for her – we would have a big day tomorrow.
The next day, we woke, had room service breakfast and brought our carry on luggage to the bus. The Disney Cruise takes your “checked bag” from the hotel to the boat for you which is a nice convenience. Jenny packed a “Day” bag for Maggie, so we would have some extra stuff for her. We were feeling optimistic, happy to see family and ready for travel. Orlando is landlocked so, cruising from Orlando would be pretty boring, which is why we had to take a 45 minute bus ride to Port Canaveral. We knew we were going to be headed out with a ton of people and were ready to keep Maggie entertained, happy and hopefully not overwhelmed. Crowds make her anxious.
Day to day, we have down very well and when we travel we learn as we go. Every trip is different. So after our experience at LAX, we sat Maggie away from the screens on the bus, looking to keep her sensory system in check as long as we could. When we got off the bus, it was a mad house, trying to register to get on the boat. It was well handled, but since boarding wasn’t until 11AM and people started arriving at about 9:30AM, there was time to kill, and a logjam of people trying to kill said time. Maggie was entertained by Shelly, Jenny, her cousins and everyone else while I went over to register her for the KidZone. This was my first indication that things wouldn’t be easy for us. I mentioned Maggie has special needs and an aide has to be with her at all times. The Disney “Club Team” balked. “Oh no. We can’t allow that. There will be plenty of our trained staff to make sure she’s safe.”
I may have overreacted.
“Do you have someone familiar with non-verbal children? Someone who can direct her in all of the hand over hand activities, so she won’t feel excluded? Do you have someone working on your cruise ship who is an expert in Rett Syndrome – who understands partner assisted scanning and can communicate with my daughter if she needs to go to the bathroom, or if she’s hurt? Because I’m bringing that person with me on your boat, and we were assured accommodations would be made to make sure my daughter could participate.”
I think my mom would have been proud of me for that one.
“You’ll have to speak with a manager on board, but I’m sure we’ll figure something out.”
The next couple of hours as we readied to board the ship were a bit messy, just dealing with that many people is a lot for anyone to handle. But eventually we got on the ship.
She’s smiling. It was fun. But, that was a lot. The whole ship can’t be like that? Can it?
And then it hit us. This is a Disney cruise. When we went to Disney Land a few days after her diagnosis and she literally tried to jump out of the It’s a Small World boat, we finally started to understand what sensory integration problems really were. And here we were facing a week long, floating, sensory integration problem.
Timing is always a big deal for us. We plan around Maggie’s schedule, especially her naps and meals. If she doesn’t eat or nap. Maggie is extremely unhappy, sometimes inconsolable. Once we registered to get on the boat, we were told the rooms don’t open until 3:30, two full hours after her nap, this is going to be a problem, but we can handle it. Then after boarding the boat, we both realize things are going to get out of control quickly. Maggie needs to eat ASAP, soon she will need to nap and now she is getting sensory input from every direction this is going to lead to a verrrrrry cranky Maggie. We’ve gotten very good at managing her sensory issues, so few people have seen cranky Maggie. Her therapists, Shelly, and us. And we intend to keep it that way. For her, not for everyone else. A cranky Maggie is uncomfortable, frustrated and not having a good time, in a world that feels like it’s assaulting her. That’s the part we want to avoid.
All of a sudden, Jenny and I are in protect mode. Shelly knows, but no one else notices what we’re doing, but I feel it. Here we are on this trip for my dad, that my family has been planning for a year and a half and it’s not what I expected. It’s not the right place for Maggie. I am overwhelmed with the feeling of …I must protect this house!
First order of business is make sure there’s a comfortable space for her. Shelly tries to take Maggie to the pool area to rest, but its chaotic. Jenny is looking for a quiet area for Maggie. Yes, right now it is taking three adults to manage traveling with Maggie.
I go on a mission to try and get into our room early. Nap time is here. I sneak under the rope barricading the guests from their rooms and look to find someone to let us in.
“Rules don’t apply to some people, I guess” – I hear someone whisper. “If only he knew,” I thought. We would give anything to be a family that doesn’t always have to be on high alert. I’d love to tell my kids to wait, they will be fine just swim with the other hundreds of kids.
I find our room and, after making sure it was one of the rooms that had already been cleaned and prepared I retreat to find Maggie. Jenny was in the same protect mode and moved her from this.
To a nice quiet area where no one was and the blaring sound of the DJ didn’t quite reach. There’s a fountain she can play in, but not safely, not a real pool. I shudder to think the only thing she’ll be able to do is play in a fountain on an expensive Disney Cruise for 7 days. I take Maggie and bring her to the room. We read stories, talk about the cruise, and what we are about to embark on (as we have a hundred times before or so), and eventually she falls asleep.
I text reinforcements (Shelly and Jenny) so I can continue to “establish a perimeter”. Only my perimeter is a force field to protect Maggie. Shelly arrives to watch her and I head to the “Kid Zone”. Jenny has started to look around the ship for safe places as well.
“I was told to speak to a manager when I got aboard.”
“Right away, sir. I hope you’re having a magical day so far.”
“Yes. Magical. Thank you.”
A few moments later, a 24 year old kid (I remember when he was I. or I was him. Anyways it’s like looking into a black mirror at an alternative universe) shows up stating “I’m the manager.”
I explain, as I did on shore about how Maggie’s aide simply must be in the kid zone for her to safely play. And he, as they did on shore, assured me she’d be fine with their current staff, adding “we simply can’t allow adults that aren’t employees into the kidzone.”
This is getting frustrating, we were told before the cruise Shelly would be able to accompany Maggie into the Kid Zone. We want Maggie to feel included, but she also needs a lot of help.
I explain our situation again and implore him to try to find out if accommodations can be made. He agrees to do so and I tell him I’ll be at Guest Services.
I head to Guest Services.
I explain that the ship is simply too loud. They mention the first day is always louder and more chaotic than the rest. The room, though a fine size, is smaller than an average sized hotel room, and as such, doesn’t have the requisite amount of aimless wandering space that Maggie would require. We were under the assumption, it would be a little larger. The kidzone is unacceptable as a playzone for Maggie without an aide. And there’s nothing for her to do on this ship. We were told there would be accommodations for her and so far, within the first 2 hours, before we have even left port, everything is falling apart. I demand a solution.
The lovely South African, or New Zealand lady ( I confuse those accents all the time), talks to me calmly, apologetically, compassionately. She offers to show me some spaces that might be nice for Maggie to chill out in. They’re rarely used, usually quiet. She leaves her desk and walks us around the ship, which feel uncharacteristically shaky, though she assures us that’s normal. She shows us the schedule of when movies are playing (blaring) at the pool, so we can avoid them. She suggests they might be willing to lower the volume. She shows us the schedule of some of the tamer events. She reminds us that things are crazy now because everyone is on the ship, but once we port, things calm down a lot. I thank her. She tells me to have a magical day. I feel a little like that’s Disney code for screw off.
When we return to the front desk, the kidzone manager kid is there. I ask him if he has good news for me. He regrets to tell me that he does not.
“That’s unacceptable,” I say. “I’m going to need to talk to someone higher than you,” I say or something like that
Jenny is crying, and embarrassed that I’m yelling at this kid. We are prepared to walk off the boat. An hour later they have a solution for us. Chalk that up to a win. In spite of the method.
At dinner, it’s loud. It’s a banquet hall with hundreds of kids under the age of 10, with the requisite clinking and screaming. I try to order her food quickly. If we get her eating, and we’re singing during dinner, she’s likely to be ok. The staff doesn’t understand. It takes too long. Maggie needs to escape. We take her outside the restaurant. There’s a band playing. We find a quiet corner and sing her favorite songs. She’s happy.
We bring her back in and finish our meal. Shelly takes her to bed. We sigh in relief. One day down. Six days to go.
After that first day, the food service was actually fantastic – catering to her specific dietary needs exquisitely. The head server made sure to take our gluten free/dairy free order down for breakfast and dinner to make sure Maggie had everything she needed at the time she needed it.
Day two was hard. We were at sea and there really wasn’t much Maggie could do. Her favorite thing to do, which we thought would be our saving grace is swimming. The pools were packed and there was a Disney movie loudly playing on a jumbotron at all times. So we spent most of the day trying to figure out things for her to do, try to help her not feel overwhelmed and uncomfortable. By the end of the day, though blasphemous to even think, we weren’t sure we would make it through the entire cruise. Can we really put Maggie through this for 5 more days?
Day 3 we woke up and the ship was really rocky. We were sure we were getting off the boat to fly home. We went to breakfast, Maggie was wimpering and then turned pale white, she is obviously nauseous. Luckily this was a Port day. Almost everyone got off the ship, but us. We stayed and played in the pool area for hours with Maggie. It was us and the life guards and other staff. We asked them to lower the volume of the movie. They tried to be helpful and cold also see Maggie wasn’t stable, and would watch her like a hawk while we were in the pools. Fine by us. Shelly grabbed Maggie at noon had lunch with her and Maggie took a 3 hour nap. So Jenny and I went into Mexico to have lunch with my parents. Things were looking better. We decided to keep trying. We wanted to be with my family, we will figure it out.
By Day 3 we started to find a routine. We’d wake up, eat her pre-ordered breakfast, swim, eat a gluten free donut for snack, swim, eat lunch, then she’d take a nap. It was still too loud, but if we sang her favorite songs to her, she seemed to be able to focus on us and everything else would fade into the background.
I was singing constantly. I had to apologize to people in the elevator.
Jenny and I would escape to the ports, enjoying traditional Mexico food in Mexico, scootering to a hidden little restaurant in the Cayman Islands and wading through street peddlers for jerk chicken in Jamaica.
With our mornings spent relaxing with Maggie, there was enough time to visit each port briefly. The Caymans we could have stayed at for another day or two – it was lovely. Same goes with Disney Island. It was a beautiful, extremely kid friendly beach. There were no roads, or anything. It’s just a beach. For Disney cruisers. It was relaxing. And just what we wanted and needed.
For the rest of the ports, it was nice to see so many places, but, primarily, it was just nice to get off the boat. People had started verbalizing this was the “rockiest ship they’ve ever been on”.
“Perfect,” we thought.
The moment we start to feel nauseous, we both fear Maggie feels the same. Earlier in the week Jenny and I had both discovered the on board gift shop sells those acupressure sea bands. We both buy some. The four of us (Shelly included) wear sea bands for the remainder of the trip and they help immensely. I’m not sure how much they helped Maggie, she seemed less nauseous, so I was glad there was something that seemed to help that wasn’t medicine. After our last experience with medicine, we’re scared of most medicines at this point.
The afternoons were spent walking around visiting the Disney characters and taking photos with them. Maggie, most of the time, loved it. The Disney staff weren’t very accommodating with the special needs thing, though. They required everyone to wait in line as there were no fast passes or anything, and since standing still is complicated for Maggie, one of us would wait in line while Maggie jaunted around, only to be retrieved at just the right moment. They also didn’t fully understand the idea that not everyone should scream in order to get her to smile, but most of the characters, Maggie was thrilled to meet, anyhow. Later, when I was talking with her on her computer, she told me she loved meeting Mickey, Minnie and Tinkerbell but did not like seeing Daisy Duck.
Poor Daisy Duck.
Also on Day 3 we found out they had those foam ear plugs at guest services. What a life saver. We put those in and Maggie was back to her old self, more or less. Dulling the sounds, really helped, and while her smile never really went away throughout it all, we saw less tears and frustration after we started using ear plugs. We saw more focus and less escapism with them in. Why didn’t we think of this sooner?
Things started to look up from here. Her cousins start to grasp how to engage with her. Her girl cousin, Ai-Linh starts using partner assisted eye gaze – asking her yes or no questions and noticing if she looks directly at Ai-Linh (yes) or turns away (no). She orders french fries so Maggie can have some. Though she makes a point to let her brother know he’s not allowed. She helps pick out which princess she got to dress up as.
Her cousins are having the time of their lives – free from any real parental rules – we barely see them – they’re at the kid zone or on the sports deck. Liem remarked a handful of times, “This is the best vacation ever”. We all eat most meals together, and though the first few days were stressful, the remainder of the trip was nice. I think it’ll be like that no matter where we go. New places present new issues and until we figure out how to erect our Maggie force field, we’ll struggle to understand these new worlds.
The whole trip was a reminder to us how different things would be if Maggie didn’t have Rett. How awesome this would have been for her if she didn’t have the difficulties she has. But that’s not our reality or hers . She loves Disney, Frozen, Mickey, Dora, Tinkerbell – these are her faves. So we were really hoping for the best. This cruise is a fantastic, wonderful vacation for kids. If your kid has food allergies, issues, they really cater to you, but if your kid has sensory issues or anything else, it’s not the easiest place to be. And, if we knew what it was going in, or if we had spent any time really thinking about what it was going to be, other than Jenny’s constant worry about Maggie’s safety, we could have prepared better, we could have set up our perimeter earlier. We expected it to be magical. And it was, once we decided to make the magic on our own.