This year, I am riding for a patient, and dear friend, Damon! It is an honor and privilege to share Damon's story!
Damon is a 15-year-old who was admitted to our inpatient rehab unit following a Selective Dorsal Rhizotomy surgery. SDR surgery removes some of the nerve roots in the spine for patients with cerebral palsy to improve their walking pattern and improve mobility. Cerebral Palsy, or CP, is a genetic disorder that affects a person’s movement, muscle tone, and posture. There is brain damage to the maturing and growing brain, which impacts their muscles and movement. There are varying degrees of CP. Damon has spastic diplegic cerebral palsy, meaning his legs are most impacted. Damon’s mom was diagnosed with cervical cancer and while pregnant with Damon had a surgery to remove the cancer, which led to an infection a few days later, ultimately causing Damon to be born prematurely at 27 weeks and being diagnosed with CP.
From the moment I met Damon I knew he was going to be someone special to me. Damon was transitioning from his bed to his wheelchair for the first time. I walked into his room with Halo and offered the smallest bit of encouragement to Damon, as it was evident he had the complete power and confidence to know he was going to be able to transition to his wheelchair. This was roughly 4 days post-op from his spinal surgery. There is often fear associated with those first movements after a major surgery, but Damon was up for the challenge. What struck me most and almost immediately about Damon was his determination and ability to find gratitude in every little thing.
This first interaction was indicative of the person Damon is. Damon moves through life in just the same way... from a place of gratitude. There were many moments of his admission that were difficult for Damon. He experienced grief that his body was not where he hoped it would be at the time of discharge. He experienced the feelings of “what will my friends think,” and he also had many lows of missing home and his friends. All of which are totally normal to be going through during a lengthy inpatient admission.
Though the lows felt low, there was always an underlying joy and gratitude that exuded from him. Damon was the patient who if I was having a bad day, I knew going to see him would cheer me up! I think it’s supposed to be the other way around ;) Damon told me once that is he is typically the “advice giver” and that he wants everyone around him to feel good. This was evident in the way he spoke to others, how he encouraged peers in the hospital, and how he loved. Damon family saying is, "if you have found a friend in Damon, you have found a friend for life.” There is nothing more true.
Through adversity, disability, challenge, and hardship, Damon is not the person to dwell on the negatives. Damon reminds me that there is always something to grateful for. Today, and during this training season and ride, I am grateful for Damon. It is such a joy to be able to ride to honor Damon’s story and his infectious energy. It will be very, very hard. But if I can channel even an ounce of Damon’s determination and gratitude, I am certain it will be the most special ride!
If you feel led to donate to my ride, all of your donations will go directly towards our ARCH program, which supports kids and teens, like Damon, with physical disabilities being able to participate in activities like skiing, biking, rock climbing, golf, fishing, and more!