Kids who live with chronic pain have same desire as anyone else their age: to feel understood, connected, and supported. Attendees at the second Pediatric Pain Warriors retreat, held over Memorial Day weekend in San Antonio, TX, experienced all this and more. The retreat included 90 kids with pain and their family members. (View a slideshow from the weekend.)
The weekend kicked off with a welcome dinner, which included a surprise visit from former Los Angeles Chargers linebacker Charmeachealle (Mike) Moore. On Saturday, children and their family members were treated to an education day with speakers covering topics from virtual reality for pain to medication safety. On the final day of the weekend, everyone headed to Morgan’s Wonderland, a handicapped-accessible theme park, for some well-deserved fun in the sun. Founded in 2010, the park admits anyone with a special need free of charge, no questions asked.
Attendees also were able to visit some San Antonio hot spots, like the Alamo.
But most importantly, children and their families were able to spend time getting to know each other through games, activities, and other opportunities to connect.
“It’s the worst feeling in the world to see your child suffer and feel helpless to stop it,” explains attendee Kris O’Brien. “As parents to a newly diagnosed pain warrior, we felt completely alone on this journey. We were scared. After attending the retreat and meeting other families coping with the same struggles, we have hope for the first time in months. But more importantly, we have people we can turn to who understand, who share our experiences, who offer advice, who embrace and encourage us when we need it. Thanks to the Pediatric Pain Warriors, we have a tribe.”
Mikki Snyder, age 16, says, “I finally met someone with my disability in person. It was amazing to meet people who understood my struggles because they had been there themselves. I’m not sure I would have met anyone with my disability in my age group had I not gone to the retreat.” She wasn’t alone: “I finally met someone like me” was the refrain of the weekend. With chronic pain, it can be hard to find peers who understand the struggle.
“Kids with pain can feel very isolated as they watch their peers engaging in activities that they can’t do,” says Casey Cashman, Director of the Pediatric Pain Warrior Program. “It’s easy for them to feel depressed or bad about themselves. We want to make sure they understand that they are not alone, and that there is support. We also want to help them focus on what they can do despite pain.”
U.S. Pain was able to cover the expenses of the weekend retreat for attendees via funding raised through its Points for Pain program, as well as the sponsorship of Johnson & Johnson and Genentech. Points for Pain was created when Cashman’s son, Tyler, decided he wanted to honor his mom’s struggle with chronic conditions by raising funds for kids going through similar things. Since 2015, he has raised more than $100,000.
The visit with Moore was made possible by AloeVeritas.
Kathy Green summed up the feelings of many retreat attendees when she says, “Being around other families that get it was amazing. We have no one in our day-to-day life who goes through this and, although we have surrounded ourselves with compassionate friends, if you don’t live it you don’t know it. So being with other families that are like ours was totally invaluable. Being able to talk through things and be heard. To be validated and to receive real life working solutions was wonderful. That was the true value of the conference for me: the community of my peers.”
Beyond weekend retreats, the Pediatric Pain Warrior Program also offers educational webinars; a pen pals program; an awareness magazine featuring patient stories; and more.
To learn more, visit www.pediatricpainwarrior.org.