Kids Find Courage and Hope at Summer Camp
THE POWER OF THE HUMAN SPIRIT
By Kaitlin Burnash '14
"Fairy tales are more than true—not because they tell us dragons exist, but because they tell us dragons can be beaten" (Neil Gaiman, Coraline).
This summer I lived a fairytale. Not in the traditional "prince saves princess" way, or in a way in which I finished my summer by riding off into the sunset with my prince and my entire life figured out. Instead, it was in a way that was real: a way that was impactful, purposeful and intentional; a way that took everything I believed in and transformed it into something more; a way that radically changed the lens through which I view the world and everyone in it.
It was a fairytale where I saw kids who spend their entire year in a wheel-chair fly down the zip line, and witnessed kids who have never been able to swim because of sickle cell anemia, jump into a pool for the first time. It was a fairytale where kids who spend their year in and out of the hospital under the supervision of anxious parents and doctors had the opportunity to express themselves, dance, paint, and sing their hearts out because they finally felt special. And in these small yet magical moments, the dragons of loneliness, despair, hopelessness, and sadness that surround each of them all year long at school and in the hospital, were being defeated by the powers and magic of love, hope and joy.
From those whom I told about my summer work at Double H Ranch, a camp for kids with terminal and life-threatening illnesses, I got mixed responses of, "Wow, it's great that you're doing that" and "Oh my goodness, isn't that too sad?" But to be honest, I never felt more loved, supported, uplifted, and encouraged than I did at Double H. Double H is truly a place of magic. A place of overabounding love. A place where I learned how to use every single moment to be intentionally kind, and what the faces of true courage, determination and compassion look like. A place where for the first time kids who are often told "no" are always told "yes." A place where everyone is accepted exactly how they are. A place where children facing so many obstacles in life learn that they too deserve to be celebrated. And as a result of all of these things, deep healing of the heart and soul occurs.
On the first day of every session, 126 beautiful, unique children pour through the gates and each carries the scars of their diagnosis upon them in some way. Whether it was the power chairs they needed to get around, the buckets of medications they needed to make it through a day, the Pods they needed to communicate, or the frailness of their bodies from hundreds of chemotherapy treatments, each has been given a greater share of the weight of the world than they should. This weight comes from a multitude of illnesses including cerebral palsy, sickle cell anemia, spina bifida, mitochondrial disease, hemophilia, Duchenne muscular dystrophy, cancer, diabetes, juvenile dermatomytositis, eosinophilic esophagitis, and juvenile rheumatoid arthritis.
But the moment the children pass through the gates, they are no longer cared for and loved because of their fragile nature, but because of the unique, beautiful, uplifting light that fills them up. I got to give each of them a gift: the opportunity to forget about the diagnosis that consumes every other aspect of their lives outside of Double H. I got to show them that they are loved and cherished as unique individuals with so many gifts to share with each other and the world. And that they deserve to be celebrated for the incredible spark within each of them that has so much more power to overcome illness then it does to be vanquished by it.
While I've been alive for 7,472 days now, it took only 62 to change my perspective, my heart, my soul, and my life. At Double H, I learned that life isn't about surviving or getting by. It's not about having a perpetual countdown to the next weekend or school holiday. It's not about just trying to make it through another test, another class or another day at school. It's certainly not about living in a rigid and controlling health cycle where your days are consumed with the next workout or next healthy meal. And it's not about buying into the perfectionist lifestyle and attempting to be prettier, smarter and more successful than the person next to you. It isn't about waiting for the sun to shine and then getting out and dancing, running and skipping in all the beauty the world has handed over to you.
Instead, life is about laughing amidst the challenges. Smiling when you feel like crying. Loving your beautiful, flawed, imperfect self for all the good and beauty you can offer others. Dancing when life has thrown you a huge thunderstorm, knowing that someone is walking the same path with you, even if not right beside. Living with hands fully open ready to share all of your incredible gifts with the world. Relishing the feeling of the wind on your cheeks as you fly down a zip line or sprint at top speeds across the ground, even if you only get those few seconds of pure joy once a year. Life's about choosing to dance solely because you can. It's about being abundantly kinder than necessary, knowing that it could very well turn around your life and someone else's. It's about choosing to love people before you've even met them, so that you can be the one to invite them back into the sunlight. It's about being a beam of magic, light and joy for those who have gotten lost along the way.
I had so many moments this summer in which I truly felt the power and magic of the universe. I felt all of the potential love that fills this world in one moment. I felt the kind of fulfillment that people search for their entire lives. In these times I realized that my happiest moments were when I was giving them to someone else.
One of the biggest highlights was a string of 15 minutes in which I helped one of our nine-year-old campers with mitochondrial disease, climb up the cargo net so that he could zip line down the other side. To most people, climbing up a cargo net is a modest accomplishment that might leave you a little sweaty and tired. To my camper however, it was something that he didn't believe was possible. Mitochondrial disease is an illness in which the mitochondria in cells malfunction, leading to a lack of necessary energy to power the cells and causing lack of muscle coordination, weakness, pain, and vision loss. My camper spent his week here in a wheelchair with little energy or ability to complete all of the fun, physical activities Double H offered. However, after watching girls in previous sessions—girls who had no movement in their lower limbs and who spend their entire year in wheel-chairs—hoist themselves up the cargo net solely with their upper body, I knew that together we could accomplish this feat. So, together, we began climbing up the cargo net. It was difficult at times, but with my constant encouragement, he kept climbing until he made it to the top and soared down the zip line on the other end with the biggest smile on his face.
And it was in that magical moment that I truly realized what camp was all about. To many kids, the cargo net symbolizes their diagnosis; every moment they've had to fight for things other kids take for granted; every time someone has told them "no" because of their illness; and every moment they've been sidelined, isolated and separated from kids their own age. But when they climb to the top and overcome, they are reminded that there really is hope and that there is a magical world awaiting them if they just have the courage to reach out and grasp it. The future is calling their name, too, wanting them to be a part of it and experience all of its joys and beauty.
And right then I made a choice. To sprint up and down the hills near the dining hall with my over-energetic nine-year-old boys even if it exhausted me. To go on rides at the amusement park that terrified me and rides that made me want to vomit repeatedly because it brought the biggest smiles to the kids' faces. To walk around in soaking wet leggings for hours, after getting dropped in the dunk tank six times in a row. To smell like sour milk for two days straight after getting "pied" in the face at the talent show, because it was worth it to have my camper with a brain tumor say that it would be his favorite memory of all from the summer. To skip meals and scarf down cold food because I first wanted to ensure my campers with mitochondrial disease got their correct meals and my campers with cerebral palsy were taken care of. To provide 45-minute piggy back rides, until my back was ready to collapse inward by the end of the day, for my campers who didn't get that kind of love at home. To sprint across camp with my children in chairs so that they were never in the back of the group or missed out on any of the fun. To do push-ups and squats all throughout meals to convince my seriously ill campers to take all of the medications they needed to enjoy whatever life they have left. To eat every single one of my meals without any hands because of the smiles and laughter it brought to the faces and hearts of my campers. Because in those moments of laughter, I was instilling hope in them for their scary, uncertain futures. And in those smiles, I was reminding them that there was so much good ahead for them. And in those tight goodnight hugs and dances into bed, I was reminding them that the world had not forgotten them, and that they were incredibly loved, celebrated and cherished for the uniqueness that comes with their diagnosis, for the joy that fills their heart, and for the bravery and courage that has become a necessity to getting by.
Because for me, each day is just another day. I have an undefined time limit to explore the world and all the joy, love and happiness it has to offer. But for a lot of my kids this summer, their time limit is much shorter. It's not endless, doesn't stretch years into the future, and isn't a potentially beautiful string of joy-filled moments. When they leave camp each summer their future is extremely uncertain. The next year will be filled with hospitalizations for sickle cell pain crisis and acute chest pain. Friday nights spent slowly recovering from chemotherapy shots. Days sobbing over their progressive loss of muscular function and movement as they can no longer complete simple tasks like walking and going to the bathroom, tasks that you and I take for granted. Hours sitting on the sidelines during lunch because they don't have the same energy as other kids to play constantly. Long days at school being bullied by classmates for being "dirty" for having HIV and AIDS, or for being "weird" for weight gain caused by spina bifida. And birthday parties feeling sidelined because they can't safely enjoy any of the sweets you and I relish. This summer, I had the power and the opportunity to give them moments of love, encouragement and joy that would get them through sadder moments like these. Moments that they can turn to when they're in the dark and that will pull them back into the light. Because for right now, none of that matters, and "Today could very well be the very best day of their life."