I just spent a week as a volunteer counselor at JA Camp (Juvenile Arthritis Camp) - and I think I'm still recovering!!
After being rejected to volunteer at Camp JRA in Pennsylvania, I did a little digging and discovered that there was actually a camp for kids with arthritis right here in Colorado! It is a much smaller camp - run by the same families for the past 20 years - so I was initially unsure whether they would let an outsider join their counselor staff. But they welcomed me with open arms and I got to spend a week getting to know 40 amazing kids with arthritis, ages 8 to 16. And the really amazing thing about volunteering at a camp in my home state is that I will get to see the same kids at other events throughout the year, which I am really excited about.
Camp. Was. BUSY!
We swam every morning. We did crafts. We played games. We went boating. We went horseback riding. We had a hayride and roasted marshmallows. We got a hip hop dance lesson. We went fishing and bowling. The bomb squad brought their robots for us to see. The Denver Zoo brought some animals to visit (owl, macaw, alligator, possum, snake) and HawkQuest brought some predatory birds (falcon, barn owl, kestral, and a young bald eagle). We got to go into town for one night and the kids did go karts, bumper boats, mini golf, and water balloon wars. The junior counselors (14+ who helped us look after the little ones) got to go zip lining. We had FUN! And I took pictures and videos of everything and made a short slide show for the kids to watch on the last night of camp, which everyone really seemed to enjoy.
We also learned about our arthritis and had a visit from a nutritionist. The kids' pediatric rheumatologists were counselors at the camp, so they had plenty of opportunities to ask questions and learn about their arthritis, both formally and informally. Aside from myself, there was also another counselor with arthritis - she was actually former camper - so the kids had opportunities to talk with people who understood them. The kids were also encouraged to be responsible for taking their own meds, and knowing which meds they had to take and why. And there was always someone around who understood if you were feeling too tired or achy to participate, and no one made fun of you for sitting on the sidelines.
But it wasn't all fun and games. For one thing, I was truly exhausted and achy (horseback riding, in particular, did a number on me). And I wasn't the only one. The kids were also exhausted and achy too, and that was really frustrating for them when they wanted to be having fun. And there were some hard, heart-wrenching moments for me as a counselor as well. One of them was having to explain to the kids why it was ok for our vans to park in the handicap spots - because none of the kids thought of themselves as handicapped. And, while I was teaching a little girl how to make a lanyard, out of nowhere she said to me "my friends at school don't understand my arthritis." And another little girl even had to leave camp early with a fever and ended up in the hospital. With all the fun we were having, it was really hard to get these little reminders of the kids' struggles, their chronic illnesses, and their compromised immune systems. It just doesn't seem fair to them.
But overall, camp was full of positive moments for these kids. On the first day there was a little girl who was really scared to have her parents leave her, but when she found out that her roommates and I all had arthritis too - that we all took methotrexate and did enbrel shots too - she was willing to stay and give camp a try. That little girl had a huge smile on her face for the rest of the week - she may have ended up having more fun than anyone! And I loved seeing the kids at the campfire with their faces and hands completely covered in marshmallow. One girl in the group I took horseback riding had fallen off her horse the year before and was really scared to try again, but she braved through it and I was so proud of her. And, when we were driving back from fishing listening to Glee's version of "Don't Stop Believing," one of the little boys in my car asked if we could stay in the car to listen to the end of the song - so he and I sat in the parking lot and belted out the end of the song together.
Really I think that's the message that all the kids at JA Camp heard - don't stop believing. They might have JA, but they aren't going to let it stop them. And I'm so proud of all of them and so honored that I got to meet them and learn from them last week. And I can't wait to see them again at the next event!!
That camp sounds wonderful, Mariah. I would have loved something like that as a kid - I never knew any other children with arthritis. I'm going to look around and see if there's something similar in my area. I'd love to volunteer!
HELEN: I think that's a great idea! It's really great for the kids to meet other kids who have arthritis, and I think it's also awesome for them to have role models living with arthritis too.
I am so behind in writing to you... I've been so happy reading about your posts... and I wrote a long response to your beautiful note about APL and then lost it to cyberspace. But I think of you all the time!
I'm so happy that you got to be a counselor there! I know they were lucky to have you as a mentor - with all you have accomplished! And as a parent _ i just wanted to thank you for the remarkable gift of your time and attention. One of my close JA mom friends sent her daughter to that camp. Not only did E have a blast.. but for the mom, it was a welcome release from the stress of daily biologic injections. The mom literally panics sometimes at the idea of what will happen if she is in a car accident and unable to give the shot that keeps the arthritis just below the surface. For five days - mom didn't have to worry. For five days, E's sibling had mom and dad's attention without worrying about arthritis.
You gave a gift not only to the campers, but to their whole families!!!!
I'm so glad you had fun too....
COLLEEN: I REALLY enjoyed the experience! And, honestly, most of those kids have had arthritis longer than I have, so I got to learn a lot from them too - they are all so brave and full of life! And I'm super excited that I ended up at a camp in my home state because I'm already planning to go to JA Day in August, so I'll hopefully get to hang out with some of the same kids again. ~;o)
And thanks so much for your note. I was so focused on the kids that I didn't even think about the parents and siblings, so I'm glad to know that they benefit as well. Getting diagnosed with RA was difficult enough at 25 - I can't even imagine it at age 3, or for that matter when your child is age 3. I'm glad there's anything at all I can do to help.
AMAZING! You're amazing, those drs are amazing, the kids are amazing. I love every part of this. Good for you, lady. Good for you!
Mariah, I'm so happy you had the chance to be involved in this JRA camp! Lucky kids to have such a positive mentor in their midst. It sounds like you also had a lot of fun. Unfortunately so much activity comes with a price for us patients with RA (i.e. aches and pains) but I hope the memories will speed up with the post-camp recovery.
A: Thanks. ~;o)
MIRELA: I'm happy too and I did have a lot of fun! I think I got as much out of it as the kids did!
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