Happy New Year!

/

Hello to the new year!

2023 is here and we’re so excited to share our plans for the coming year.

But first, let’s catch up with what the SuperCaptainBraveMan team did in 2022!

This year, Kyle turned 16. And by the end of the year, he has grown to an amazing 4 feet 4 inches. Which means that sooner rather than later, he’ll be taller than both Nurse Brigette and Nurse Leah!

2022 was a year of collaborations for us.

Partnering with O & P in Motion, 2 murals featuring SuperCaptainBraveMan are now proudly displayed on the outside of their Los Angeles location.

We also had the privilege to collaborate with Marc Laver and his initiative, Jonnie and Friends. This inspiring initiative led the restoration of Universal Universe’s All Access Playground. We are so thankful and honored to be part of such a lovely project.

And we here at SuperCaptainBraveMan want to send out a special thanks to Fenton Primary School for hosting our first live book reading since the pandemic. We love sharing our stories with kids and have missed seeing all of the excited faces live and in person.

New Year, New Merch!

We’ve added more items to our shop! In addition to our T-shirts, you can now order hats, beanies, PJ pants, and “One Brave Kid” shirts. Even our four legged friends can get their SuperCaptainBraveMan on with our doggie kerchiefs featuring Mochi!

Head over to our shop to grab some garb to dress in SuperCaptainBraveMan head to toe!

This year—more than most—reminded us all that we are beyond grateful for each and every one of you. Your support, comments, and likes mean the world to us.

Our continued love for creative stories that showcase inclusivity are at the heart of everything we do. From diabetes to Down Syndrome, SuperCaptainBraveMan strives to teach kids about kindness, empathy, and the power to connect to the superhero inside.

Happy 2023!

Comment below with your New Year’s resolutions and hopes for the coming 12 months.

Stay safe and stay brave, SuperCaptainBraveFAM!

World 1-1: How We Breathe

/

Hello, SuperCaptainBraveFAM!

I’m Nurse Leah and I’d like to talk about breathing. Why do we do it? Why do we need it? How does it all work?

The answer to the first two questions is simple: we breathe in to get fresh oxygen into our bodies and we breathe out to get rid of carbon dioxide and other waste gases.

Oxygen is an essential part of the process our body’s cells use to create energy in the most efficient way. A byproduct (or result) of that is carbon dioxide (CO2)—which is dangerous to keep in our bodies and that’s why we need to breathe it out. The process of using oxygen to make energy in our cells is called aerobic respiration.

There’s a way for our cells to get energy without oxygen, but it actually takes more effort and the byproducts of that process can be more harmful to your muscles. That process is called anaerobic respiration.

So, oxygen is really, really important for our bodies to work at its absolute best.

And the place where our body exchanges carbon dioxide for fresh oxygen is right there in our lungs!

That brings us to the third question I started with: How does it all work?

The parts of the body responsible for breathing are collectively called the Respiratory system. That’s because it’s a system of organs and parts of your body that work together to get some of the materials needed for aerobic respiration.

David, from A Kyle Adventure Book 2: Signs of the Season

So, let me introduce you to the parts of the Respiratory system, starting at your head with the nose and mouth.

When we breathe, air usually comes in through our nose or mouth. The truth is that the passages that make up the inside of your nose and mouth are connected. That’s why liquid comes out of your nose if you laugh too hard while drinking.

Have you ever gone out when it was especially cold and every time you breathed, it hurt your chest a little? Or has it ever been so hot and dry that you can practically taste the heat?

It’s because the difference in air temperature from your own body temperature contrasted a bit too much. Your body likes everything inside to stay pretty much the same temperature and works hard to maintain that. The inside of your body also likes to stay moist and doesn’t like to dry out too much—think of the inside of your mouth—and so one job of the mouth and nose is to warm and moisten the air entering your body.

Another job is that they keep particles that don’t belong in the body out. Things like dust and pollen get stuck in our nose hairs and sneezed out. Or the back of your mouth catches the bigger particles and you can cough them out.

Just a quick reminder to please cover your nose & mouth when coughing & sneezing, use tissues to wipe your face, and wash your hands afterward. Doing these things can help keep yourself clean and prevent the spread of diseases that take advantage of how our Respiratory systems work.

After our nose and mouth, the next part of the Respiratory system is the trachea.

The trachea is tube that runs alongside and in front of your esophagus. The esophagus is a soft, flexible tube that food travels down to get to the stomach. The trachea is more rigid and keeps its shape a lot more easily to allow airflow to travel properly.

The easy travel of airflow is why another name for the trachea is “The Windpipe.”

The trachea, bronchi, bronchioles, and the lungs.

The trachea, bronchi, bronchioles, and the lungs.

As it goes down into your chest, the trachea branches off into two bronchi—which are smaller tubes—and from there bronchioles—which are the smallest airway tubes of all.

At the end of the bronchioles are small clusters that look like tiny, tiny balloons. These clusters are called alveoli and this is where the exchange of oxygen and carbon dioxide take place.

The alveoli are covered with the smallest blood vessels in the body and the red blood cells in the vessels are the ones that trade the carbon dioxide they hold for new oxygen. They then take that oxygen to the rest of the body.

But more than the lungs—and all they hold—are needed to take a breath.

This is where muscles like your diaphragm and those in your rib cage come in to play.

The diaphragm is a muscle that sits right below the lungs and is the major muscle used in breathing. This boss muscle is dome shaped and when it contracts, it flattens. This makes the space inside your chest bigger and causes the lungs to inflate and expand.

The muscles in your rib cage—right in between your rib bones—also help expand your chest whenever you inhale.

When the space inside your chest gets bigger, air is sucked into your lungs and the alveoli fill with fresh oxygen. That is what happens when you inhale.

When the diaphragm and rib cage relax, the space inside your chest returns to it’s resting size. The air you just breathed in is released through your nose and mouth. That is what happens in your body when you exhale.

Breathing helps everyone race around and have fun!

And the exchange of oxygen and carbon dioxide happens in millions of tiny alveoli during that short time between inhaling and exhaling.

Our bodies automatically know how to take a breath. People like singers, dancers, actors, and athletes all learn how to control their breathing and use their respiratory muscles to improve their performances. It’s really amazing how our bodies take so many separate parts and use them together to do something like breathing!

If you want to get a simplified visual of how your body breathes, then here’s an experiment that adults and kids can do to make your own “mini lung”!

Make your own model lung at home!

Disclaimer: This experiment is relatively well-known and available online through multiple sources. Always be sure to be careful and have an adult handle the scissors. Safety is always important!

How to Make a Model Lung

Materials Needed

  • A plastic bottle

  • A straw (we used a wide, reusable boba straw)

  • 2 balloons (regular party balloons)

  • An elastic band or tape

  • Play dough or something to seal the bottle top (we used half of a balloon and tape)

  • A marker

  • Scissors

Instructions

  1. Mark the bottle halfway down and have an adult use the scissors to carefully cut the bottle at the mark. You can use the bottom half as a planter or decorate it to hold pencils. We’ll be using the top half for the experiment.

  2. Get one balloon and tie a knot at the opening. Use the scissors to cut the top off of the balloon.

  3. Take the top half of the bottle and stretch the tied-off balloon around the bottom of the bottle. Tape in place, if needed.

  4. Put the straw in the other balloon and secure in place with an elastic band or tape. Be careful not to crush the straw! Air needs to travel through it. You can blow gently through the straw to check if the balloon inflates to be sure.

  5. Put the straw and balloon into the neck of the bottle so that the balloon is inside the bottle near the center.

  6. Now, you have to make an airtight seal at the top of the bottle. There are two ways I know how to do this depending on what materials you have:

    1. You can use play dough to secure the straw at the top of the bottle where the cap usually goes. Make sure the straw isn’t crushed and that no air can escape through the play dough.

    2. Take the other balloon piece and have an adult cut a small hole in the center. Slide the top of the straw through the hole and bring the balloon piece down to the bottle opening. Secure the straw to the balloon with tape. Tape the balloon edges to the bottle, or you can use an elastic band to seal the balloon at the bottle opening.

Presto! You’ve made your own mini-lung!

You’ve probably figured out how the different materials make up the different parts of the respiratory system, right?

  • The bottle = your chest and rib cage

  • The straw = your windpipe

  • The balloon inside the bottle = your lungs

  • The balloon at the bottom of the bottle = your diaphragm

But how do you see it in action?

If your lungs inflate because your diaphragm makes the space inside your chest bigger…

What happens when you pull down on the balloon at the bottom?

Don’t be discouraged if it doesn’t work the first time. Just re-check for any holes or leaks in the tape or play dough to make sure everything is sealed and there are no leaks.

In fact, problems like small holes or leaks in our respiratory system can keep our own lungs from inflating properly. And it’s things like that that doctors and healthcare professionals look out for when treating patients who are having trouble breathing.

Knowing how our bodies work is important for us to know how to take care of ourselves. And especially important so we know how best to help those who might need it.

The human body is intriguing and amazing to learn about. There’s always more to learn and share.

Join us next week for another installment of…

The Science Saga of SuperCaptainBraveMan!

Until then, stay safe and stay brave!

Join our mailing list and don’t forget to like & follow SuperCaptainBraveMan on social media to hear all about it!

www.supercaptainbraveman.com

Instagram: @supercaptainbraveman

Facebook: www.facebook.com/supercaptainbraveman

Going on a Disney Cruise (Part 2)

/

Greetings, SuperCaptainBraveFAM!

Before we get into the nitty gritty, I want to say that even though we’re talking about going out with family and friends in this blog series, these are all fond memories of past times that we hope to recreate soon. But not just yet. Remember to mask up, socially distance, and wash your hands faithfully to stay safe. Stopping COVID-19 means slowing it’s spread. It starts with you.

Also, please be aware that the information below is based on our own experience and, to our knowledge, correct as of January 2020. Procedures and amenities may change when cruise lines relaunch.

Last week, I talked about what steps we took to make sure we could safely navigate a cruise experience with Kyle. Today I’m shifting away from sharing information to sharing our story.

So…

A long time ago, in the year 2019…

‘Twas a long time ago, longer now than it seems…

Once upon a Mother’s Day Sunday…

We all converged at Kyle’s house to start our vacation. And by “we all” I mean 11 of the members of Team Kyle.

With Kyle’s personal travel list checked twice by his parents and perhaps a few more times by yours truly, we went over our own individual preparations one last time.

“Everyone have their passports, I.D.s, and credit cards?”

                                                                                                          “Yup!”

“Did you all remember to fill out the online embarkation forms?”

                                                                                                           “Yes!”

“Did everyone pack sunscreen?”

                                                                                               “You betcha!”

Kyle & his self decorated autograph book

We were packed and ready to convoy to port and the cruise ship, the Disney Wonder. With one final addition, the vans were loaded and we were on the road. What is that addition you ask?

Autograph books for Kyle, Jax, and Remy, of course!

We arrived at the port in no time at all and we were through with check in & customs very quickly. The Disney Cruise Line sent out luggage tags for each of us and we gave them to the cast members before boarding the ship. The only things we didn’t check in were our personal belongings and the more fragile of Kyle’s equipment.

The kids were awed at the size of the ship and, honestly, a few of the adults were as well. The joy and magic of a Disney experience began the moment we set eyes on the Mickey silhouette painted on the bow. And so, Team Kyle made its grand entrance and embarked on the Disney Wonder.

“Believe it or not, my favorite memory of the cruise was when we were boarding and ‘Team Kyle’ was announced over the speakers in the ship lobby. It was so exciting!” ~ Superb Sis Honour

Looking out of the porthole

As mentioned in the last blog, we needed to get an extension cord for Kyle’s stateroom. Paul went in line at Guest Services to request one while the rest of us wandered around the main lobby and waited for our staterooms to be ready. The kids looked outside the giant portholes and towards the ocean. While the adults smiled indulgently and snacked in one of the ship’s many lounges.

Once we got the ok from the ship crew that our staterooms were ready, we headed there and settled down. Inside, all of the moms in our group--Samantha, Jenn, and I—were surprised with small bouquets for Mother’s Day. All signed with love from Team Kyle. Though my sneaking suspicion still believes it had more to do with a certain man named Paul.

Remy claimed the top bunk in our stateroom and hurried over with Jax to see Kyle. I had one more thing to do though. With the decorations I made in hand, I went to everyone’s room and began slapping magnets on each stateroom door. Everyone had a Mickey head decorated with their favorite Disney/Pixar character and a special vacation mode version of themselves drawn by Victor.

And every door had a special magnet with Kyle’s name on it.

I saved Kyle’s stateroom for last and as I did, I passed a nice couple on the way. One was in a wheelchair and was accompanied by a ship crewmember with a portable oxygen concentrator. Much like the one we have for Kyle. We all headed towards the handicap accessible staterooms and I waved a quick bye before heading into Kyle’s room.

Inside, Victor and Brigette already beat me to helping put some of Kyle’s things in drawers, shelves, and in the fridge. Honour was entertaining Jax and Remy out on the small veranda attached to the stateroom. And Kyle was relaxing on a very spacious bed.

As I looked around at the familiar controlled chaos, I noticed that something was missing.

When we booked the cruise, we were told that we could only bring one of our own tanks of oxygen with us. Going for three days, we brought our own portable oxygen concentrator. But that alone wouldn’t be enough for Kyle’s needs. So, we filled out the proper forms and arranged for a third-party company to deliver extra oxygen tanks to the ship and have new tanks brought to the stateroom every day of the trip.

We got on the stateroom phone with Guest Services and asked them when the tanks would be coming. After much back and forth, we learned that the company received two requests for supplemental oxygen on our floor (or deck as it’s called on a ship).

Remember that nice couple I mentioned a few paragraphs ago? Through a clerical error, one of the requests was assumed to be a double booking and subsequently cancelled.

The ship hadn’t left port yet and the Disney Cruise Line did everything in their power to fix the error. And fix it they did. A new oxygen tank was delivered just in time for everyone to join the mandatory ship safety meeting. We were promised a new tank every day of the cruise and the cost of the tanks would be taken care of by the cruise line.

One hour on board and we were already blown away with how the Disney staff went above and beyond for their guests.

“I felt like whenever I asked, they were able to deliver.” ~ The Victor Soldier

Mandatory safety meeting done; the ship began its journey out of port. And Team Kyle headed up to join the Sail-A-Wave Party.

Now, I’ve only ever been on Disney cruises, but I imagine that other ships have nightly entertainment, too. But being a Disney cruise, the expectations of our first-time cruise goers were high. And they were not disappointed.

Every night on board there was a show at the Walt Disney Theatre. Seating was great and there isn’t a bad view in the house. The first night was a show called The Golden Mickeys. Then on Pirate Night was a short stage version of Frozen. And on the third night, we saw the show Disney Dreams—An Enchanted Classic.

“The entertainment quality was truly outstanding. Loved every moment!” ~ SuperCaptainBraveMama Jenn

There aren’t themed nights every night of the cruise. But we all decided to try and dress up for at least two of them. Those two turned out to be Pirate Night and the last night of the cruise became our informal Formal Night.

Every day we’d spend time together & apart, dress up, meet up at the theatre, take in a show, and then head down to dinner.

Ah…dinner. How can I describe the wonder of the meals aboard the Disney Wonder? I think I’ll have to start with how the meals at the different restaurants are set up.

When you book a trip, your party is assigned a dining group. Each group eats at a certain time and at a certain on-board restaurant each night. This allows guests to experience every restaurant. There is a more upscale restaurant geared toward adults, but it requires advance reservations and we all wanted to eat as a family.

On Night One, we ate at Triton’s which is a fancy Little Mermaid themed place. Very seafood heavy in terms of the menu. Our waitstaff introduced themselves and explained that they would be with us each night. You see, as you rotate through the restaurants, the staff rotates with you. So that they know your drink preferences, your seating needs, and any allergy considerations.

In our case, we needed a chair removed from our table to accommodate Kyle’s wheelchair. And we were given advance menu options for the next night’s dinner for the people in our group with allergies.

“The ship never stopped feeding us. It was so great. I wanted to eat more, but I was always full!” ~ Captain Corey

“I really really liked the food. Seriously. I ordered everything on the menu.” ~ The Marvelous Miss Brigette

Our servers also quickly learned that we could, would, and did order everything on the menu and eat our way happily through the meal. Some of us ordered more than one entrée and perhaps more than one dessert each. But we were on vacation. Calories don’t count on vacations, right?

But that’s just our early evening and dinner experiences. The days were just as exciting.

While at sea, there are plenty of activities for guests to enjoy. There’s the pool and lounges, of course. At the main pool, there is a large screen that plays Disney movies and cartoon shorts throughout the day. As well as a below decks movie theater that played movies nonstop.

“Kyle and I watched ‘Cinderella’ on deck.” ~The Victor Soldier

“We checked out the movie theater and saw that they were showing ‘Avengers: Endgame,’ but decided to go join the animator’s class instead,” ~ Leah the Wordsmith

Winning 2nd place in Movie Music Trivia got us some nifty hats!

The kids enjoyed the on-board kid’s only club and activities. And we all tried our hand at drawing at one of the many art classes hosted throughout the ship. The different lounge areas and club rooms had all kinds of trivia, family games, and dancing activities. Sometimes there was so much to choose from that we had trouble deciding where to go!

There was even a scavenger hunt for the kids. One night, after we came back from dinner, there were papers in our staterooms with the Scavenger Hunt rules and clues.

“Jax and I helped Kyle with the Scavenger Hunt! We had to go all over the ship!” ~Rambunctious Remy

Going all over the ship with Kyle was an experience.

He has a very sturdy wheelchair in order to accommodate him and all of his equipment. I learned very early on to not fight the wheelchair. For 9 times out of 10, you will lose and the wheelchair will win.

By virtue of being a cruise ship, the hallways in the stateroom decks are narrow to begin with. Add in a 13-year-old in a wheelchair and at least 2 other adults with him at all times, and a narrow hallway becomes difficult to navigate.

We prefer not to dwell on the negative aspects of living an adaptive life. But it would be a disservice to our readers to not point out that a pet peeve of ours is the indifference or obliviousness of the general public to the difficulties of those with limited mobility.

The Disney Wonder cruise ship has 3 sets of elevator banks with 4 elevators each situated across or near a staircase for guests to use. Each elevator on the ship is large enough for about 8 adults to stand comfortably.

We’re used to waiting for elevators and the occasionally tricky process of maneuvering him into the relatively small space. But sometimes, the wait for the elevators on the ship strained the fortitude of even the seasoned members of Team Kyle.

And while we appreciate the patience of the Disney crewmembers and cruise line guests who vacated the elevators to allow Kyle into the car and then re-entered after he was settled, there were instances where excited guests chose to take the elevator instead of the stairs despite the long wait time.

“I think there should be a dedicated elevator for those with mobility difficulties. One you can access with your room key or something.” ~Sensational Sam

A possible solution is having a crewmember stationed at one elevator during high traffic periods and areas to conduct guests into the elevators. We experienced the longer wait times after the shows at the Walt Disney Theatre and during the dinner rush.

Waiting for Kyle’s first moments in another country, however, took almost no time at all.

Ensenada, Mexico is an amazing location filled with many activities & excursions for those who book them early enough and are willing to spend some extra money on the third-party companies running them.

Kyle, Jax, and Remy showing off their new bracelets.

Taking Kyle’s mobility and equipment needs in mind, Team Kyle chose to discover the streets of Ensenada on foot, instead. We were assured that a wheelchair accessible bus would be available and once everyone ate breakfast, we were off. Thanks to years of considerable practice, Kyle was secured on the bus quickly.

The kids were amazed at the musicians and artisans we saw as we strolled by. We took the time to learn about some of the history of Mexico. Brigette, Jax, and Remy especially took in the sights in honor of their half-Mexican heritage.

As we finished a leisurely lunch, the cloudy skies gave way to sunshine. We made our way back to the ship and scattered to our own devices until the dinner show.

And to prepare for Pirate Night.

Now, I haven’t gone into much detail about the handicap accessible staterooms because, although I visited Kyle’s room, I didn’t spend enough time there to comment on what it was like to care for him in the space.

But I can share what Paul and Victor had to say about it.

While there was space for the wheelchair, the amount of equipment added to the fact that three of our group was staying there made the spacious room a bit cramped at times. ~ SuperCaptainBraveDAD Paul

Kyle had a bath every day we were on the ship and it was definitely a two-person job. Paul and Victor would—in their bathing suits and with swim shoes on for traction—take turns holding Kyle steady while the other bathed him.

The bathroom was large. If we wanted to, we could have brought the wheelchair in there and still have room to move around. But it was more like a locker room shower area—tiled with a drain in the center, a pull-down bath seat, and a detachable shower head on the wall. I wish there was a small tub in the corner. It wasn’t ideal, but we managed. ~ The Victor Soldier

Oh, a quick PSA. Sunscreen doesn’t work if it stays in the bottle. Please remember to apply liberally. Even during overcast days. Sunburns can happen anywhere. As we all remembered when we saw Kyle’s face in the pictures. He was ok, just flushed for the next few days.

Team Kyle likes to dress up. And we like to surprise each other. So, when given the chance, we went all out. From drawing scars on cheeks to wearing fake tattoo sleeves, eye patches to stuffed parrots on Kyle’s shoulder…to Paul sauntering to our table with a head full of Captain Jack worthy hair.

We ate at Animator’s Palate, which in itself is a spectacle of color and movement. Our party of particularly playful pirates took tremendous delight in devouring each and every mouthwatering morsel on our plates.

After dinner, there was the Party Like a Pirate event up on deck. It included watching Pirate Mickey zip line over our heads and the entire gang dance to some great tunes. The night came to a wonderous close with fireworks over the water.

It’s was especially great for Kyle. Because although we’ve visited the Disneyland Resort, we always leave before the fireworks. Being on board the ship meant that we didn’t have to worry about travel time home. His room and bed were a short elevator ride away. He could enjoy the fireworks and music for as long as he wanted.

Our last full day at sea started with some morning yoga at sea for the girls and some cartoon watching on deck for the guys. We all ate at the buffet, named Cabanas, for lunch. Then watched Remy good naturedly sass me at the How Well Do You Know Your Family game show over at Azure.

The ladies of Team Kyle with the man himself.

As the last night, it was our Formal Night. And we all dressed up. Hair done, make up on, and flashy clothes pressed for impressing the masses. The show of the night was Disney Dreams—An Enchanted Classic, which is Victor’s favorite show on the cruise.

Afterwards, we had some time before dinner. Some of us stayed in the lounge near Tiana’s Place to play some music trivia. And others headed back to Azure and the Silent Dance Party taking place there.

If you’ve never heard of a silent dance party—I didn’t know what it was until the cruise—it’s a party where each person is given headphones that are connected to a few wireless music stations. All the music is played through the headphones and the dancing and shuffling and singing happens in a mostly music-less room.

Kyle with big sis Honour and dad Paul

Kyle loves music and enjoyed every moment of dancing with his sister and dad.

Dance party done and trivia medals won, Team Kyle sat down for our last dinner aboard the Disney Wonder at the liveliest restaurant on board: Tiana’s Place.

Tiana’s Place is exactly what I imagined eating at her restaurant at the end of The Princess and the Frog would be like. But on a boat. There was a live jazz trio playing covers of classic Disney songs. Tiana stood on stage and welcomed us all. She even came to our table and signed a few autographs.

The waitstaff—who’ve been with us the whole trip—led a quick promenade through the tables, complete with purple, green, and yellow Mardi Gras beads for everyone.

But my absolute favorite moment was when we got to sing “Happy Birthday” to Kyle.

We were that loud family over by the windows. Cheering and hollering. Holding up phones and getting in each other’s shots.

Kyle Celebrates his 13th birthday

“It was all great. Knowing that we could all be together to celebrate Kyle’s birthday and to provide a memorable experience to all of my kids, and their kids!” ~SuperCaptainBraveDAD Paul

Paul calls all of the adults in Team Kyle “his kids” and we’ve become family to each other over the years.

Although we were there to celebrate, there is always a key part of us that is always in “Nurse Mode.” Whether it’s unconsciously checking the numbers on Kyle’s pulse oximeter to reaching for the suction machine before his parents can when he needs it. On this vacation, more than any other day trip, we were able to relax.

“The Disney Wonder put a lot of my worries to bed. So much so, that I was genuinely able to enjoy the cruise without worrying too heavily about the concerns I typically have when traveling with Kyle.” ~The Victor Soldier

We were able to focus on everything a typical family focuses on when on vacation. Thanks to the work of the crewmembers aboard the ship who went above and beyond to see that our needs were met, we relaxed. We had fun.

We could joke about who ate the most at lunchtime; who sang the loudest along with the band at dinner; laugh at the sight of the stylish pedicure Paul sported when he sauntered on deck.

We could and we did. And it was a blast!

For a more colorful retelling of our days at sea (videos included), check out the SuperCaptainBraveMan YouTube channel here!

Stay safe and stay brave, SuperCaptainBraveFAM!

Sea you later! 😉

Join our mailing list and don’t forget to like & follow SuperCaptainBraveMan on social media to hear all about it!

www.supercaptainbraveman.com

Instagram: @supercaptainbraveman

Facebook: www.facebook.com/supercaptainbraveman

Going on a Disney Cruise (Part 1)

/

Hello, SuperCaptainBraveFAM!

Disclaimer: Please be aware that the information below is based on our own experience and, to our knowledge, correct as of January 2020. Procedures and amenities may change when cruise lines relaunch.

It’s Nurse Leah here on another Monday. Last week, I talked about how—before the pandemic—we used to go on short day trips with Kyle. (If you haven’t read it, you can click here to do so!) It’s a list of “must haves” for traveling with Kyle. Over the years, he’s also gone on overnight and multi-day trips to the Disneyland Resort, San Diego, Hawaii, New York, and Baltimore. The trip I’m about to share with you is our most ambitious to date.

In May of 2019, Kyle spent three days at sea aboard the Disney Wonder cruise ship.

When the idea of taking a short, three-day cruise down the California & Mexican coast came up, you can bet that Team Kyle had to put our collective heads together to find out if it was even possible. Jennifer Norman, Kyle’s mom, spoke to his team of doctors to ask if traveling was advisable for him. Once we got word that as long as reasonable precautions were taken, Kyle could go on the trip, Team Kyle started researching the process of taking a person with adaptive needs onto a cruise ship.

Travel agents are a great resource and avenue to use when you can. Lots of times they have exclusive deals and information for families looking to enjoy every second of their vacation.

Team Kyle wanted that too. But we wanted to research everything ourselves and sometimes questions that come to mind when talking directly to the source don’t occur to you when talking to a liaison like a travel agent.

We looked into every aspect of the cruise. From scouring travel blogs and YouTube reviews of the wheelchair accessible staterooms; to contacting the Disney Cruise Line directly and asking questions that catered to Kyle’s specific needs, we poured months of research into ensuring that if we went on this trip, Kyle would be as safe as possible.

We were in uncharted waters and looked for information where ever we could find it.

Since the cruise would take us down to Ensenada, Mexico, the first order of business was getting Kyle a US Passport. Well, passports for all the kids coming on the trip. When I say that Team Kyle was going on this cruise, not only did I mean Kyle and his family. The nurses dedicated to Kyle’s care and their kids were invited, too.

It was a celebration, after all. In 2019, Kyle turned 13. After all of the hard work, setbacks, and triumphs, our Bootie-boy was now a teenager.

The Disney Cruise Line has a section on their website dedicated to answering the questions of guests with disabilities and what accommodations are available for them and their needs. This was way back in 2019 and the information might be different when the cruise line relaunches. The site only answered so many questions, Jenn and I spent quite a while on the phone with a Disney Cruise Line cast member to get clarification on several key areas.

Their Request for Special Services form covers requests that include:

  • plans to bring specific medical equipment

  • a request for distilled water (which we absolutely need for Kyle and was provided every day by the cruise line)

  • a need for electrical power and supplies deliveries

  • the need for a wheelchair accessible room

  • wheelchair accessible ground transportation when available

  • trained service animal notification (Permits are required for every country and port you’ll be sailing to and can take weeks or months to complete, so be aware of that. Also, the animal needs to be trained with the proper documentation for their roles.)

  • plans to travel with an oxygen concentrator and other oxygen related needs

  • requests for guests who have hearing disabilities like stateroom smoke detectors with strobe lights, and an American Sign Language interpreter for select shipboard shows & entertainment.

  • requests for guests with visual disabilities like audio descriptive devices and enlarged print formats for dinner menus.

  • severe food allergies like the ones Nurse Victor and my daughter, Remy have

As mentioned in The Adventures of SuperCaptainBraveMan books and on this blog, Kyle is oxygen and ventilator dependent. The process of having oxygen tanks on board the cruise ship was both straightforward and complicated.

Straightforward because the forms needed were easy to access and fill out.

Complicated because…well…they were forms and red tape is red tape.

We were informed that we sadly could not bring our own oxygen tanks. But they provided us the contact of a third-party distributor that had a contract with our port of departure. We secured the correct forms and received confirmation that the requested oxygen tanks would be delivered to the dock and placed in our stateroom.

Along with the oxygen tanks, we wanted assurance that the equipment we needed to bring could charge safely. Without going into specifics, there are at least 5 pieces of equipment that need to be charged nightly for Kyle’s care. All staterooms have outlets, but none have power strips.

And you can’t bring your own from home due to cruise line regulations.

But what you can do is request an extension cord from Guest Services the moment you board the ship. Unfortunately, when we went, you couldn’t reserve one beforehand. Paul Norman, Kyle’s dad, was unanimously volunteered to be the one to brave Guest Services when the time came.

Every stateroom has a mini-fridge and bathroom with sink. So, Kyle’s medications and feeding supplies had a place to chill—ha ha—and get cleaned every day.

The Disney Cruise Line website has floor plans and pictures of the wheelchair accessible staterooms. But pictures can only tell us so much. That’s where Nurse Victor came in with his obsession for travel vlogs and did some research.

YouTube became a great tool for use to see the accessible staterooms from a guest's perspective and one of the most informative videos that we watched over and again was the Disney Wonder Handicapped Accessible Stateroom 7138 Tour by RaeTravels.

And by coincidence, Kyle’s stateroom number on the Disney Wonder was 7636—on the other end, but the same floor as the room in the video. More video travel vlogs and online ship diagrams prepared us for the general feel of where and how Kyle could navigate the ship.

My favorite thing...was how incredibly accommodating the Disney Wonder staff was in regards to what it means to travel with a person with special needs. There wasn't a moment I felt: "Kyle can't do this."

Nurse Victor

The practical components taken care of, Team Kyle could focus on the traditional aspects of going on a cruise and a Disney cruise in particular. One of the best parts of going on a Disney cruise is the themed nights and the dining experiences.

This cruise in particular had a Pirate’s Night scheduled on the itinerary. And if you need to know anything about Team Kyle, you need to know that we love to dress up. We also like to surprise and prank each other, so we kept our individual pirate get ups a secret.

Originally, we were assigned the second dining group seating—where dinner service started at 8 pm. Having 13-, 9-, and 8-year-old kids in our group meant that an earlier dining option was preferable. We put in a request for the main dining group—where service started at 5:45 pm. The day we left port we were told that our request was granted and our first dinner would be at the restaurant, Triton’s.

One tidbit that we stumbled on when researching for Kyle was the fact that many people decorate their stateroom doors with magnets. Cell service is spotty even with the onboard app available to the people in your party. A lot of guests have whiteboards with dry erase markers on their doors so they can leave notes for their family.

When I saw how amazing these decorations were, I knew that we had to create something special for Team Kyle. Nurse Victor did an amazing job drawing everyone in “vacation mode” and I did what I could with MS Paint and printed out some Mickey head decorations and stuck them on magnet sheets I got online.

Some guests even take part in a small gift exchange. But with everything else going on, we couldn’t contribute to the idea. Next time, we definitely will.

So, we had costumes and we had decorations.

What comes next…? It was a Disney cruise. What came next was autograph books, new swimsuits, and lots of packing and repacking!

Join us next week where I get into the actual story of our trip and not just the practicalities of planning our possibly perilous passage into the unknown…otherwise known as a Family Vacation.

Check out the vlog we made outlining today's info (with extra pictures and video) below!

Stay safe and stay brave, SuperCaptainBraveFAM! Sea you all later!

Join our mailing list and don’t forget to like & follow SuperCaptainBraveMan on social media to hear all about it!

www.supercaptainbraveman.com

Instagram: @supercaptainbraveman

Facebook: www.facebook.com/supercaptainbraveman