For the last two years, Sue and Aurora reached out to me and asked if my son would like to attend Summer Camp at CCK.
The careless fun of childhood and socially active teen years are some of the first casualties in a sting of losses for these kids who live day to day, in pain, in and out of hospitals and appointments, and often feeling discounted and discouraged. It’s just what seems to happen when you live with a condition that has no cure, no clear treatment path and quite frankly, still not enough awareness or support in the medical community. But I wasn’t sure how I felt about the idea of being surrounded by the very illness that we try so hard each day to forget and live beyond. Would it be uplifting or depressing? Inspiring or worrisome? And how the heck was he going to participate given his pain levels?
We decided to go for it, and it was the BEST decision we ever made.
From the moment we arrived, we felt welcome and wanted. The staff at CCK engaged my son and the other kids almost immediately upon arrival, and quickly started breaking the ice. My husband and I looked at each other with tempered but thrilled amazement as my son told us to go ahead to the room and he would meet us there. This was HUGE! He was talking to kids he just met, and felt comfortable enough to shoo us away? I felt almost giddy.
Our room was clean and accessible and the entire campus was easy to navigate. The staff was friendly and helpful and we entered the dining hall amazed at the loud, happy scene before us. Kids in wheelchairs zooming around after each other and crutches and braces and all kinds of adaptive equipment everywhere, and none of it mattered. We sat with a family who told their daughter’s complicated story over dinner and quickly met other parents who shared and understood all of the baggage and challenges that we carry. I started to feel that we belong.
Though many of the kids already knew each other, and all the words to the songs and camp cheers that they sang, the counselors and other parents really went out of their way to help make my son feel included and part of the gang. We were so grateful.
Each day was filled with activities from woodworking and art to archery and fishing. Normal, wholesome fun! We even got my son up on a horse for the very first time since his accident. It was awesome! Planned nightly activities gave the kids time to get together with new friends that they made, and socialize, and just be kids. But the highlight of the week had to be the Color Games, and all-out-anything-goes camp competition where the messier the better and parents and counselors are fair game. The kids participated as able, and everyone just had an awesome day!! I looked at my son, laughing uncontrollably covered in green slime and and soaked to his core and in that moment, all the hardship and heaviness just melted away. I felt pure joy, something my soul had truly missed.
Now this is not to say that the pain or problems magically dissipated at camp. Far from it! Each day we would skip a session or two as needed so my son could rest his leg and recover. I noticed other kids would check out too. Some were in wheelchairs one day and walking the next, and popping in and out of braces and crutches depending on what they needed at that given moment. But there was nobody saying, “hey wait a minute, you seemed fine this morning…” or “why aren’t you walking?” Everybody there gets it. Everyone understands that needs can change hour-to-hour day-to-day based on pain levels. It all just seemed normal, because for all of us, it is. What a relief to not have to explain.
Dr. Amy and the medical staff were outstanding too. They understand the intricate co-morbid challenges like mast cell and POTS. I was even surprised to learn that Dr. Amy has had a full spinal fusion just like my daughter. No wonder she has such compassion for these kids and their challenges.
The other highlight of the week was the children’s talent show. There were so many brave and talented kids up on that stage, singing and performing. For many, like my son, it was their first time being able to do that. Did I mention it was just, plain awesome?
And as the week came to a close, my husband and I felt a sense of sadness that it was time to leave CCK and go back to reality. But our family felt a renewed sense of strength and community from our time at camp. We met so many new friends and learned about other people’s experiences that will hopefully help us as we navigate our own path. Cannot thank CCK, TCAPP, US Pain and Rock Out To Knock Out RSD, Ace and all of the sponsors who made this week possible for us. It gave my son the lift that he needed, my husband and I a chance to see him being a kid, and summertime memories that we will remain forever grateful for.