Feeling Good (Again) at CCK’s Pain Week

RSDSA went back to pain week at CCK. See what this year's experience was likeBy Samantha Barrett for the RSDSA blog.

Last year, you may recall that I had my very first camp experience at the Center for Courageous Kids in Scottsville, Kentucky. I liked it so much that I went back to represent RSDSA again this year! If you thought the inaugural year was amazing, wait until you hear about this year. Thank you to The Coalition Against Pediatric Pain for allowing me to tag along with you. Another thank you to the US Pain Foundation and Rock Out to Knock Out RSD for co-sponsoring this camp, too!

Last year, we had about 19 children total, which was a great first year! This year, we had 49 children total and then parents/guardians. We completely filled the camp! That is monumental. We had people travel from all over the country to be at camp. One family even came from the Republic of Georgia. Children from ages 2 through 17 were at camp. As much as I hate to see children living with chronic pain, it is so nice to see them all come together. When it finally occurs to them that these other kids and families understand them, the look of relief is priceless. Here, these kids don’t have to worry about being judged for being able to walk at one moment and having to use a wheelchair the rest of the day. There is a general understanding. All they have to worry about is being kids. Children that are diagnosed with chronic pain syndromes at a young age have to grow up much faster than most other children. They have to make sure they see their doctors regularly, take their medications, go to appointments, do their homework, communicate with their school, try to stay in touch with friends, tell their parents if something feels “off,” all while learning to live with these conditions that their peers don’t understand. Some of these kids are even still trying to understand what they are going through and what is to come. Chronic pain is a much more complex subject to grasp than most people believe.

To say that camp is life changing is an understatement. Throughout the week, I was able to capture some of these memories in photographs. But for some of the memories made at camp, a picture wouldn’t do it justice. Our International Campers of Mystery week started off with getting to know one another and getting to the lodges. The first day was such a happy reunion for the families that were able to come back after last year. The new families were able to start talking to each other and the veteran families to get an idea of what to expect. I was personally excited to see the people I met last year that were coming back. I was greeted with hugs and tears from so many of the parents. Seeing the kids from last year that suddenly looked so much older was mind-blowing. Oh, how a year can change so much! The new families got to know me, too. I was just as excited to get to know them and help make their camp experience enjoyable. I drove some of the families to their lodges on a golf cart with the help of my new friend (and TCAPP volunteer) Marissa as well as CCK staff member, Alvin. We had an orientation in the gym, where the rules were reviewed and campers and their families were taught the CCK cheer, which we would hear at least eight times per day. One of the things that I do love about camp is that the families have to stay with their camper(s). While this rule may be enforced because of liability issues with camp, I have a completely separate reason for loving it. Having the families be with the children allows them to see their kid as a kid again. It is such a rare and beautiful moment that it would be such a shame for it to be lost. Being able to see your child be accepted and surrounded by understanding must just take their breath away. While I may not be a parent, it takes my breath away and puts tears in my eyes when I get to witness these children bond. Day One ended with time in the Fun Center (bowling or playing arcade games) or making s’mores out behind the dining hall with the camp’s general manager, Ed, and his dog, Ollie!

Camp flew by so fast. Day Two featured a CCK staple event- the Messy Games! The goal is exactly what it sounds like- the lodge that gets their campers the messiest wins! The kids and their families get to go to all of the different stations that are set up, such as the shaving cream boat, the mud pit, and more! Everyone has a limited time to get each other the messiest. This year, yellow lodge prevailed and got messiest lodge. After, the kids all rinse off with buckets of water. But this year, there was a fire truck that was there to spray all of the campers. After a day of extreme heat, this was a much needed luxury! Something fun we added this year were camper superlatives. Marissa and I had been brainstorming things that we could do to make camp even more fun, and that’s what formed. Each lodge had to assign a superlative to a group of campers each night (no child was left out). When the child’s superlative was announced, they were able to come up and pick out a prize while getting interviewed by Emily, one of the awesome CCK staff members that keeps everyone going. Moving on from there, Day Three offered up another camp staple- Stage Night! Any kid (or group of kids/counselors/parents) could participate. Whether they wanted to sing, dance, act, play instruments, or eat an ice cream sandwich to dramatic music, this was their time to shine. We laughed at the silliness, cheered on the shy campers coming out of their shells to perform, and cried at some of the most moving performances. These kids are so amazing. Day Four we had quite a bit of rain, so a lot of the outdoor activities were cancelled. It ended up clearing up in the afternoon, but since the ground was muddy, we had the camp movie night inside. We watched Zootopia, which I will admit is one of my favorite movies. Kids laid on bean bags, quilts, pillows, and more in the center of the dining hall while watching Zootopia on the big screen.

I should add that the kids did much more than just these major activities. All through the week there was woodshop, beauty shop, cooking, arts & crafts, swimming, rock climbing, horseback riding, fishing, boating, bowling, and more available. Each lodge had a designated time where they could choose from three or four options before they switched. There was always something to do. But if a child wasn’t feeling up to it and need to rest, they could go back to their lodge and nap or just get away for a moment. Every day had a scheduled “siesta” as well.

Day Five was the hardest day- the last day. We watched a slideshow prepared by camp photographer Maryanne and there were tears all through the room. Then the families had to pack up their lodges, clean up, and say goodbye. It is amazing how one week can turn a group of strangers into a family. Tears, hugs, and “add me on” insert social media network here were not in short supply. Families were taking pictures together, kids were taking pictures with friends and counsellors, and even the parents were taking pictures together. It is never easy to leave. It’s a bit like Cheers, but instead of wanting to go where everybody knows your name, you want to go where people know what you’re going through. These kids and their families made lifelong friendships. I am so honored to be a part of such a wonderful week.

CCK is honestly just such a wonderful place. Everything is accessible and they work to make everyone feel included, whether it be to try to help make sure someone with severe food allergies gets to eat, or someone with severe mobility issues gets to ride a horse. The counsellors all seem to be interested in the medical field. One of the counsellors even wants to be able to run a camp like CCK (or to be the future manager/owner). These are dedicated young adults that want to make a positive difference in the lives of children (and families) that are facing obstacles that some people cannot even imagine. The staff is fantastic and so welcoming. If you’ve been there once, they’ll probably remember you. Being able to expose all of the counsellors and other staff members to chronic pain syndromes is a great thing. Why? Because, these are the people that are your future doctors and nurses. The more they see and work with chronic pain, the more they’ll be interested or at least able to recognize various chronic pain syndromes. But don’t just take that from me. One camper said that this camp was better than a Disney Cruise. Another camper said that camp saved their life. I have to say it again, pediatric pain camp at CCK is life changing.

Here’s hoping there is a next year. Thank you, Sue Pinkham, for making so many people’s dreams come true. Thank you to CCK, TCAPP, US Pain, and Rock Out to Knock Out RSD as well. RSDSA is so happy to be in such great company and to be a part of something so great. Our slideshow should be up within the next week or so. Be on the lookout!

CCK, how do we feel?

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