The Introduction to Courage
It’s been a week since the trip, and I am still having trouble finding the right words to describe the experience. I guess I’ll start at the beginning and then let the pictures speak for themselves.
Until recently, I’d barely known of an organization called Kids of Courage, other than that they do some work with children with special needs. A very close young friend with a physical disability attended his first K.O.C. event and was signed up to join the summer trip. It seemed like an ambitious undertaking but I didn’t really give it a lot of thought.
And then Eli Weintraub, the media director for K.O.C., put out a call for a female photographer willing to join the trip. I asked for some details and casually mentioned it to my husband. It was a crazy thought to leave my family and business for 9 days in the height of the busy summer season but he encouraged me to volunteer.
Once it was official, I started looking through all the pictures on the K.O.C. website to see what I was in for. I was drawn in at that point and haven’t been able to pull myself away since then.
I didn’t know exactly what to expect once the trip actually started. As far as the job was concerned, after speaking with Eli Weintraub, Danny Schilo – director of IT, and Yitzy Engel, a photographer with K.O.C. for several years, I was pretty confident of the direction I wanted to take and the images I wanted to create. But I didn’t know what to expect emotionally. This camp is an intense immersion into a world I’d only ever looked into as a casual observer. I was worried that I’d be holding back sad tears constantly.
I couldn’t have been more wrong and I couldn’t have been more right. There were lots of moments when I was holding back tears, but never were they sad tears. They were tears of inspiration, of admiration, for these courageous fighters and their constant devoted companions who help them in their battles.
We arrived at Newark airport on Wednesday morning and checked in at the dedicated K.O.C. counters in a matter of moments. Right away, I started observing the scene around me and tried to capture the emotions through my lens. There was a sense of changing of the guards; parents were passing on the “ownership” of their children to their counselors for the week. Last words of instructions, demonstrations of medical equipment, medication schedules and then the separation. Many of these campers are absolutely dependent on others for their needs and are not often apart from their parents. This nine day adventure is a leap of independence many of these campers don’t often get to experience.
The Beginning of a Journey
Kids of Courage had a chartered flight for the majority of the campers and staff, though there were many flying out of other airports, as well. Boarding the flight took about five times longer than it would take to board a regular flight. As far as I could tell, the biggest concern on the flight itself was keeping the oxygen concentrators running smoothly for the many campers who require oxygen while in-flight. Other than that, it was smooth sailing.
As we landed, the Orlando ground emergency crew hailed us in a celebratory shower from the fire trucks. The spirit of K.O.C. was contagious before the airplane doors were even opened! Deplaning also took quite a bit of time (and it was HOT!), but we then loaded a fleet of buses that took us to the DoubleTree Resort at SeaWorld.
Room keys and swag bags were waiting for everyone. Every camper and staff member received enough t-shirts for every day of the trip, a camp sweatshirt, and cap. On many outings, these bright orange tshirts were enough to gain “fast pass” entry to rides and attractions, no questions asked. They certainly made my job of finding our campers all over the parks easier!
During dinner, which, along with all the other meals, was catered by Lasko Catering, the luggage magically appeared in all the rooms. By magically, I’m referring to the logistics crew who did an incredible job of getting everyone and everything where it needed to be for the duration of the trip. After dinner, announcements and lots of dancing – thanks to DJ Avi who was on hand the entire trip with just the right music for every moment, everyone went to bed to get ready for a week of constant action. By “everyone,” I mean those who didn’t still have things to do, like editing pictures (me!), finding missing luggage, and a million other things that happen behind the scenes. And besides the medical team who didn’t really sleep at all the entire trip.
A very lavish and varied breakfast was served every day to fuel up for the hours on the road. There was also a selection of lunch foods and snacks to take along in our K.O.C. lunch sacks. Me, I just tanked up at breakfast. It was too hot to eat at the parks! And with the approximately 25 pounds of camera gear on my back, there was no room for anything more than a cookie or two. There were always snacks available on the buses, too. Diet? What diet? Chips and cookies all day! Walking around the amusement parks burned around 225 calories per hour (yes, I wore my heart rate monitor to check!), so those chips were gone pretty quickly.
But joking aside, those calories and dehydration are a big concern when traveling with a large group of medically fragile campers. It was a pretty common occurrence to see a camper (or counselor) topping off a g-tube with Pedialyte while waiting in line for the next ride. The logistics guys walked through the parks pushing carts and strollers full of water bottles, encouraging everyone to drink as much as possible. K.O.C. also arranged a cool-down center at most of the parks we attended, besides for the first-aid stations they set up. But these are just technical details. The real story of the day was the fun everyone had. Everyone.
Back at the hotel, after dinner the partying continued with a concert by 8th Day! (My kids even got to “attend” via Skype for my toddler’s favorite song, Cheery Bum.) Non-stop dancing and singing, and then surprise guest DeScribe took the stage! The energy level at that concert was through the roof. Everyone, regardless of any physical challenge, was part of it.
Love from Strangers
After getting some (too little!) sleep, we were up and at it for another day of adventure. SeaWorld was around the corner from the resort so there was no need for buses. Some of us walked and some took the shuttles that were going back and forth.
Another day of great rides and shows. Everyone loved the Shamu show, of course. After the SeaMore and Clyde show, the SeaWorld staff went out of their way to help out with our group photo session. It was a very time consuming undertaking and they just smiled all the way through it – even when we held up the next viewing of the show.
When we walked out of the theater, I was sure we’d be facing annoyed and impatient crowds. But it was the opposite. The people were waiting quietly and respectfully while our troops made their way through the ropes. Everyone was in awe of the spectacle that is a K.O.C. outing.
Back at the hotel there was a BBQ and some spa time for the girls (and some fashion-forward guys!). While everyone was getting ready for Shabbos, we had some portrait time on the beautiful grounds for those who made it down on time.
Taking the portraits of these beautiful campers was one of the highlights of my trip. I had to stop about 15 minutes before candle lighting so I could dash up to my room on the eleventh(!) floor, change quickly, and run back down those eleven flights to make it to the dining room on time. And then I got 25 hours of vacation!
Shabbos was absolutely beautiful. There was such a peaceful and happy atmosphere the entire time. The tefillos were really special – though I do admit this was the first time since I became a mother 13+ years ago that I was in shul from the beginning of shacharis until the end of mussaf.
One of the campers is an experienced chazzan and his mussaf was so beautiful that many of the guys didn’t want it to end, leading to an impromptu chazzanus sing-along in the shul. Lots of good food and a nice long nap later, Yehuda Green held an incredible havdala. Then, the Couragers enjoyed a full concert with a fabulous Melave Malka.
I think Sunday was the best day of the whole trip. We started out with a bus ride to Legoland (public apology to my 6-year-old Lego obsessed son Benny) for more rides and shows.
Then the buses took us to a private little beach for an incredible evening of dinner, water sports (jet skis, speedboats), pony rides, petting zoo, face painting, dancing and just plain relaxing. I think it was my personal highlight of the trip.
It was so uplifting watching every camper (and counselor) doing their own thing and finding their own “happy”. Little boys (and some bigger ones) digging in the sand and burying friends. Some friendly touch football and frisbee on the beach volleyball court. Chilling on the water’s edge during sunset. Or just feeling the sand on their feet. Completely magical. I may or may not have gotten a little bit weepy.
Monday was another really special day. This day had two separate programs for the girls and the boys, so I can only present you my experience with the girls. A short bus ride (I got a car ride with one of the docs this time, yay!) took us to the Nickelodeon hotel where we had exclusive use of the huge pool and water playground. I can’t share many pictures of this activity, but it was amazing. The girls were so free; floating weightlessly and effortlessly with no wheelchairs, braces, crutches, or walkers holding them down. The atmosphere was so serene and calm in the pool. The water slides and fountains were a different story where some campers were having a screaming good time getting their thrills without being so incredibly hot.
After swimming we had a special Double Dare show starring contestants from our own group!
Lots of physical challenges later, there was no avoiding getting slimed…
Oh wait! The fashion show that evening was the highlight of the trip. Too many high points – I just can’t choose! Never ever have you witnessed a show this fun, this courageous, this “fashionable,” this unique in your life. Campers and staff members put on costumes of their choice from a massive selection and wheeled, strutted, crawled, danced their way down the catwalk to the cheering and supports of their friends. I laughed so hard and I also cried. Because it was such a beautiful thing to see these kids completely accepted and loved by all their peers regardless of their physical differences.
Doing the Impossible
On Tuesday it was back to the rides at Busch Gardens. They really rolled out the red carpet for Kids of Courage and you could feel the welcoming spirit all through the day. I missed the beginning of one of the shows and the attendant took one look at my orange t-shirt and not just let me in, but took me around the sneaky back way and led me straight to where our campers were sitting. Above and beyond the call of duty, the staff at Busch Gardens really were partners in creating happy memories for our campers that day.
I want to highlight what it takes to make sure every camper is having the best time of his/her life and how the staff at Kids of Courage simply don’t believe in impossible. Every ride on which the park employees agree to accommodate a camper is an open opportunity. It doesn’t matter if the camper needs to be assisted on to the ride, carried on by a counselor or two, carried on and accompanied by a medic or even disconnected from a ventilator and accompanied by a doctor. Every child who wants to ride, will ride. It’s as simple as that.
The Marvelous Medical Team
Back at the hotel that evening there was a special movie night, K.O.C style. A full “concession” of snacks, pastries and candy was set up in the lobby and everyone settled in dressed in pjs for a cozy showing of Despicable Me 2.
During the movie, I went up to the third floor where the K.O.C. infirmary was set up in two rooms. My intention was to take some pictures of the infirmary to show just how much effort and preparation must go into the medical aspect of the trip, but instead I ended up chatting with the incredible nursing staff that are the backbone of the medical team.
These special people are responsible for the day-in day-out care of their assigned campers. All medications need to be measured and dispensed and carefully distributed 2-3 times per day. There is a husband-and-wife team among the nurses who literally devote their lives to the campers of K.O.C. Their home is the only one to which the parents of one of the particularly fragile campers will send their son because they trust them completely to care for him and love him the way they do. And they welcome him with open arms and hearts.
There are no words to describe the work that Nurse Sarah Miriam Kaplan puts into a trip like this. She is responsible for setting up the infirmary and running the medical team. She was down in Florida the Sunday before the trip to make sure everything was running smoothly by the time the campers arrived and stayed until the Sunday after to break down and pack up what amounts to a small pediatric wing in a hospital.
The last park of the trip was Adventure Islands at Universal Studios. Otherwise known as the park that has Harry Potter’s world. (To all those who were curious, yes, I did find a souvenir there for my 13-year-old.) Approximately three quarters of the campers headed straight for that section of the park as soon as we entered. Definitely a crowd favorite. I’m not really a Harry Potter fan so my personal section of choice was the Dr Seuss themed one. So colorful and fun – and the carousel has a wheelchair space!
The Final Night
At the hotel, there was a bit of time to shower and change for the grand banquet and closing ceremonies. What an incredibly moving evening that was.
Dinner was a beautiful feast with stations of different kinds of cuisine. And then the program began with a siyum by one of the couragers on a mesechta of Gemara. That was the beginning of the teary moments for me. What a powerful a lesson in diligence and persistence from a boy who holds the Sefer mere inches from his face in order to read it. What a special simcha.
After the siyum, several of the campers came up to share some of their personal stories and their thoughts about the trip. Truly courageous. And then the slideshow of images from the entire media team. By then I was glad it was dark in the room because the tears were flowing freely. I was so grateful to have been part of the team that captured these memories forever. Jarrod’s amazing video followed and was the perfect roundup of the complete adventure.
After all the weepy viewing, there was some more spirited dancing to wrap up an incredible 8 days.
The Courage to Say Goodbye
On Thursday, there was early wake up and we boarded the buses to the airport for the charter flight back to Newark. Boarding passes were issued at the hotel so check in was as smooth as possible. Here, too, the staff of United Airlines was incredibly accommodating and supportive of our large group.
The flight out was even smoother than the one in and we were back in Newark at the scheduled arrival time. I made sure to be one of the first off the plane so I could capture those first moments of reunion and they did not disappoint. The smiles, hugs, kisses – reunited after a refreshing break and some healthy time apart, the campers and their parents were so happy to be back together.
Now that I’ve been back for a week and I’ve reflected on the experience, a few things have changed for me.
I think the first is patience. So many times we get caught in the rat race of life and try to rush everyone along at top speed. Sometimes we need to slow down and let everyone proceed at their pace, at their comfort level.
Another lesson reinforced for me was not to judge a person by their physical abilities or appearance. Of course, intellectually we all know that, but spending a week with so many different fascinating people and talking about their lives with them, really drives home the point that everyone can have a full and stimulating life and outlook on the world. You may just need to slow down and listen. Get to know people. They will amaze you. Inspire you. Touch your soul in a unique way.
And if you’re lucky, maybe they’ll invite you to be part of their family like Kids of Courage invited me to become a part of theirs.
– Courager Esti Waldman of Esti Photography
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