I had the honor of photographing my friend Lisa’s eighteen-year-old daughter Carly this past week. Carly is a remarkable young woman who struggles with Angelman Syndrome. Individuals with Angelman Syndrome are missing a portion of their 15th maternal chromosome and face significant developmental and cognitive disabilities. Carly faces a host of issues ranging rom being non-verbal, to a sleep disorder, seizures, and needing round the clock supervision. Lisa and her husband Larry have had their lives radically changed in miraculous ways since Carly came into their lives. From their struggles has risen a ministry that has touched the lives of thousands of families. Walk Right In Ministries is an organization that supports families who care for a loved one facing special needs or a chronic illness. Their first book together, Finding Glory in the Thorns, “explores how God reveals Himself through crisis. It shares the heartwarming story of those early years parenting Carly in the midst of an unusual expression of a loving community.”
Reading their story has influenced my life and my faith in so many ways. We live in a society that focuses so much on self-reliance and perfection that we are often left reeling whenever we face struggles. Carly’s story opened my eyes to the beauty of surrounding yourself with help from others who long to show you love and support, the value of shared stories, and the power that lies within all of that. God uses our experiences to shape us while also empowering us to share those experiences with others. As a result, we become a conduit of his grace and comfort. In short, we need each other! We learn so much by simply listening, and teach each other so much by sharing our experiences and gifts.
Carly is a beautiful girl. Her hugs make your heart melt! She also has a mischievous spirit and an incredible sparkle in her eyes when she smiles. She comes alive whenever music is playing and loves to dance to her favorite music. She is also particular and stubborn! All qualities of a typical teenager! I wanted to portray all of these things in Carly. It was important to do so. This was her Senior photo session after all. My goal was to portray Carly as the beautiful teenager that she is while also showing her unique beauty and personality.
As a photographer, this photo session had its challenges. I didn’t want you to see her as a young woman with a disability, but as the incredibly beautiful person that she is. I couldn’t tell Carly how to pose like you would in a typical Senior photo shoot. I couldn’t direct her to turn her face toward the light or ask her to give me that smile at just the right moment. This session was more about interaction. Getting to know her, to laugh with her, dance with her and, yes, receive her incredible hugs. In the midst of all of that, I was able to pull out my camera and take some shots that captured a smile here, a mischievous grin there, or the contented feeling of being held by your mom. This taught me a lot about my photography. It’s not about the perfect poses or even the perfect light that you find, but rather it is about experiencing who your clients are. It’s about seeing them in their true beauty and light and preserving those moments with your camera.