Pediatric Pain Camp

How Camp Is Changing Lives For All Ages

December 1, 2015

By CRPS Warrior Candice Clifford, Volunteer from the Center for Courageous Kids Pediatric Pain Camp Session

Experiences which leave an impression on your heart are the ones that stay with you forever…

I ventured to Kentucky this past July to volunteer at the Center for Courageous Kids’ (CCK) inaugural Pediatric Pain Camp. I took a solo trip, not knowing what to expect but ready to have fun with the campers. To many, Kentucky seemed like a random place for this east coast girl to be traveling to. However, as I reflect back on my experience at CCK, there was nothing random about this trip, rather I’d like to believe it was serendipitous.

Working with children who live with chronic pain and/ or illnesses is a population which is very close to my heart. I went to school for counseling, and later received a M.S. in school counseling. However, I soon realized during my last year of graduate school that I could no longer ignore my fascination with the medical field and had to follow my passion. Volunteering at CCK was my first step in making this change in my life; I went down to KY believing this experience was going to either confirm or dis-confirm my career aspirations. Needless to say, after spending four fun-filled days with the campers and their families, hearing many stories, and speaking with some amazing advocates in the field, I without a doubt knew this is the population I would advocate for.

The only way to describe CCK is the “Disney of Camps”. The staff goes above and beyond to accommodate the campers and their families, they generously transported me to and from the airport, and went to extreme measures to ensure that everyone had a memorable time. I could go on and on about how much I love CCK, but you really have to experience the magic to fully understand what I’m speaking about. There is something special that surrounds the campus; allowing children to be a child first, not a symptom, or a diagnosis. Camp brings families together, and creates a bond that seems to grow even when camp is over. The sky is the limit, dancing is prescribed, and it’s totally normal to be laughing one moment and crying the next.

Ironically, I was also at CCK during my four year anniversary date of being diagnosed with CRPS. I’ve come along way in four years; I received both my B.S, and M.S, traveled to El Salvador on a service trip, and endured an intensive pain rehab program. Before going to camp I wasn’t very vocal about my chronic pain to the outside world. Letting people in is scary, but if there is something that someone can learn from my story then the suffering I endured was worth it. One of the biggest lessons I learned at camp, is being vocal about CRPS doesn’t mean you are making chronic pain your full story; being vocal, and advocating leads to more awareness, education,and earlier diagnosis.

Volunteering at CCK taught me more then I could ever provide my camper. There are times when I hear myself chanting camp songs and other times where I feel so incredibly blessed to have stumbled upon the RSDSA newsletter announcing the camp that I cry. Not only am I grateful that attending camp pushed me to work towards my passion of teaching yoga to kids who live with chronic pain conditions, and launching my website Empowering Roots, but it also unexpectedly led to me learning about my own health. After having conversations with two very special people and gaining knowledge from parents at the camp, I was diagnosed with Ehlers-Danlos Syndrome a month after coming home from camp

Needless to say a piece of my heart will forever be at CCK…You might not come home with a new diagnosis, but I promise your experience at CCK will be just as life changing.

When I saw RSDSA’s fundraiser Coins for Kids, I knew I needed to do my part to help more kids experience the magic of CCK. I quickly created a Facebook Event “Candice’s Coins for Kids” and informed my family and friends about my fundraising efforts. Additionally, I shared many of the videos that were created after the pediatric pain camp to show others how their donation would impact the kids and their families. Thus far I have raised $350 (not counting change). My heart is so full of gratitude for the generosity of others and I am excited to volunteer at CCK in once again this July. Hope to see you there!

CCK – We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky

July 21, 2015

By Samantha Barrett, RSDSA’s Special Events Coordinator

I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own!

The children and their families were able to partake in a few days of pure fun. The theme of the week was “Get Animated” and featured characters like the Minions, Baymax from Big Hero 6, and other popular animated characters. Each family was assigned a counselor or two to help them through their time at camp. The counselors were fantastic. Several of them are going to school for various medical degrees. They are the future of medicine. The kids all seemed to bond with their counselors instantly. As the week went on, the counselors seemed to become more and more interested in the rare conditions and diseases that the kids had. But, there was never a focus on being “sick kids,” only on the fun to be had. The kids were not required to participate in every activity. If they needed to go sit down or to go nap, they were able to do so.

There was archery, horseback riding, fishing, canoeing, paddle boating, cooking, and bowling, as well as woodshop, arts & crafts, beauty shop, a pool, a gymnasium, and an arcade. Those were just the activities that the kids could participate in daily. Each area had a water cooler for everyone to fill up their water bottles, as the heat was incredible. If it was an outdoor activity, there was also a cooler with cooling towels to help prevent overheating. It was perfect. The counselors kept making sure that their kid was hydrated and made sure that an adequate amount of sunscreen and bug spray had been applied. There was also a carnival, a movie night, talent show, and the Messy Games. The Messy Games seemed to be a highlight for everyone. Each family was assigned to one of the lodges at CCK- red, green, blue, or yellow. Before the Messy Games, everyone got paint each other’s faces with the color of their lodge. They all came out to the main court yard with their team flags, chanting their lodges various cheers. There were four stations for each lodge to go to. One station involved pudding, another station involved oatmeal, another involved shaving cream, and another was a mystery slime. The goal of the Messy Games: use each of the four stations to try to make your team the messiest. The messiest team wins. I stood in the “safe zone” watching everyone cover each other with everything to try to become the messiest. Parents, counselors, kids, and other CCK staff members were all laughing, chanting, and flinging the mess at each other. I couldn’t even tell you which team won; I just remember only being able to see people’s eyes after the games were over. After the games, they were all able to dump water over their heads to clean off. This water war was just as entertaining as the Messy Games.

The talent show was a nice surprise. There was some singing, some acting, and some musicians among other talents. The counselors helped out if their camper wanted to participate, whether it was holding their microphone for them, being background dancers, and helping keep everything as smooth as possible. These kids had some truly amazing acts, it just took the talent show to get them to expose these hidden talents. We all even got our own Playbill with the featured talent listed. We had our own Elsa, a mini Taylor Swift, a female Sherlock Holmes, and more!

Mealtime was the perfect time for everyone to bond. Everyone had the chance to sit together at the long tables. This is where everyone could chat, plan the day, vent, and just hang out. CCK was very attentive to the different dietary restrictions that some people had. Everything was labeled to say if it contained gluten, dairy, eggs, nuts, and other allergens. There was a separate area in the back where people could go to get the gluten free and/or vegetarian option for the day. Mealtime can be stressful for some, but not this time!

As I observed throughout the week, I almost forgot that these were kids that did not do things like this on a daily basis. What a blessing it can be to say that I sometimes forgot about my own disabilities as well. As camp-goer Emily Schellhammer stated: “Camp is amazing and there, you aren’t an illness or injury or anything. You are a name and a kid. You’re equal to the person(s) next to you. Here, no matter what, you fit in. You aren’t judged. Here you’re free and happy and know you are not alone.” Some of these families haven’t been able to bond like this in quite some time. Having people from all over the country created a network for the kids and their parents. A mother of two of the campers, Marianne St. Clair, said: “The camp experience provided our family a place to connect, exchange information, and develop lasting positive memories with other RSD/CRPS families. Smiles and laughter are the best medicine and although the journey was difficult to get there and home, the trip was so worth it for the children and mom.”

I look back on my week in Kentucky and tears instantly form. It was such a happy time. There was so much positivity and joy. I wish that I had been able to go to a camp like this when I was younger, although I’m sure I still would have ended up stuck in the middle of the pond in a paddle boat. It was truly amazing to get to know the kids, parents, counselors, and other staff members at CCK. Thank you to all who came out to participate and all who came out to help. This camp was a dream come true for everyone. This was a brainchild and dream of Sue Pinkham, so please join me in thanking her with the Sue chant that rang through CCK: Sue, Sue, Sue, Sue, Sue, Sue, Sue!!!

RSDSA is extremely proud to have been a part of this pilot year for the pediatric pain camp. We have high hopes for another camp experience in years to come. We know there are more kids out there that would greatly benefit from and enjoy this camp. If you would like to learn more about this camp, and/or how you could potentially help in years to come, please contact Sue Pinkham at [email protected] or (781) 771-2095.

Please consider making a donation to RSDSA today!

Learn More About the Camp for Courageous Kids

April 2, 2015

Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It’s your first day of summer camp and you are so excited to be there, to join in all the activities: archery, bowling, arts & crafts, horseback riding, etc.

Fast forward 25 years to being a mom and/or dad whose child who lives in chronic pain – there are no summer camps for your child because he/she is “too complex.”

But now there is a summer camp for children living in chronic pain: The Center for Courageous Kids in Scottsville, Kentucky.

RSDSA, together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP), is sponsoring a camp July 14-17, 2015 for children ages 7-17.

The goals of the summer camp are fun, fun, and (you guessed it) fun! It is the first time we have ever found a camp for children living in pain.

The camp is totally FREE for all participants and one parent who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today! Space is limited.

Please consider making a donation to RSDSA today!