We learned early on that Pheonix was happiest when we allowed him to live like he didn’t have physical limitations. He didn’t want to be handled like he was medically fragile. His mind was sharp and his spirit was the same as any little boy. He craved excitement and thrived on chaos. If he could cause havoc by knocking something over with a swing of his arm or kick of his leg, he would not hesitate. You could see it on his mischievous little face right before he’d knock all the blocks over or drive his RC car full tilt at your feet. I was endlessly proud of him when he did things with the intent to turn things upside down! That’s what little boys do. He knew when it was not time for messing about too and would often show incredible maturity and control. Not very often though because he was such a ham and he loved the attention and excitement of things going awry. We wanted him to be able to participate in things that he was interested in even if he wasn’t able to physically do it without assistance. It sometimes meant more work for us as his family, but the amount of joy that it gave Pheonix was an immeasurable reward. His smile and laugh would have inspired us to climb mountains with him!
Being out in the woods was by far Pheonix’s favorite place. My mom and I discovered this when he was only a few years old. Grandma’s house on my uncle’s property way up on a hill, far away from the noisy city was his escape as a little boy. Something about the chickens, trees, and open sky spoke to him. My mom offered to keep Pheonix at her house for a few days so I could take some time for myself. I ended up staying with them most of the week because I loved seeing how happy Pheonix was sitting outside in the fresh air surrounded by the sounds of nature. We decided to take him to a little pond and have a picnic. Every moment seemed like a beautiful dream as he looked wide-eyed at the surroundings. There was a path that went around the lake. We had not yet taken Pheonix on anything like hiking before. He was only a few years old and had spent most of his first few years in and out of surgery for difficulties he had related to his condition. Neither of us will ever forget the sweat, struggle, and uproarious laughter as we took a little boy in a wheelchair over tree roots, through mud puddles, and lifted his chair to get over beaver dams! When I would grunt trying to push his wheelchair through the trail, he would follow with a grunt. I was laughing so hard that I could barely squeak out the remark to Pheonix that he wasn’t doing any of the work. Maybe it was him showing moral support, encouraging us to keep pushing forward. After navigating the mile trail, we enjoyed a sticky, sweaty, exhausted picnic where we ate giant sandwiches and laughed. That day started Pheonix’s love for the great outdoors and the day we realized we would navigate any path to bring him that kind of joy in life.
We faced obstacles with Pheonix’s limitations very regularly. Our first thought was not that we should turn back or not try. It was always how can we make this work. We adapted games, tools, and even experiences. We didn’t want him to think there was anything he couldn’t do or anywhere he didn’t belong. We may have gotten a strange look or two as he would laugh hysterically while we would climb stairs with his wheelchair or go flying by runners as we ran up and down hills at the local park multipurpose trail. He definitely received smiles when other fishermen would watch him cast and reel his fishing line and then repeat it several times. The cast was his favorite part of fishing. I don’t know how he caught any fish at all, but he did! He always had the most intense, focused expression when he would do things and when the task was complete, he would smile the greatest smile. That smile was like sunshine warming your skin. That was Pheonix ALL the time! Whether he was hiking through the woods, throwing a Frisbee on a disc golf course, fishing, swimming laps at the pool, racing around a skating rink, sledding down a hill, or playing shortstop for the Miracle League, he was 110% joy! It is not to say that Pheonix did not have some tough days because he did, but when we reflect on our journey with him, those few and far between moments are background noise to all of the laughter. We are incredibly thankful for all of the experiences we shared with him on his journey. Not only did he help make hundreds of beautiful memories that make hundreds of heartwarming stories that touched dozens of lives, he made a positive impact on the lives of everyone that had the pleasure of knowing him just by being himself. His fearless, loving, adventurous, sometimes slightly ornery, fantastic self! What more can we hope for in this life, but to love who we are and be proud of what we accomplish. We heard many comments at his celebration of life that we gave him an incredible life, but that is not true…he gave US an incredible life! We only hope to continue spreading the lessons he taught us about life and ourselves through his stories in order to bring as much joy to every day as he did and still does. I look at pictures of his smiling face and aspire to have the kind of strength he had inside of him. We encourage anyone who thinks they can’t to try. Don’t quit…there is always a way even if it isn’t the way everyone else does it. This life holds adventure, joy, and laughter for everyone. Don’t limit yourself. You will miss so much.