When Ashley Jones and her husband have friends over, they pull out the family photo album. Jones is a mom, but most people she meets wouldn’t know that. Her daughter Skylar was diagnosed with spinal muscular atrophy and passed away shortly before her second birthday. That was six years ago, and now the collection of photographs allows Jones to introduce her little girl to people who never had the chance to know her.
“The gift of a photograph and the magic in it is that we freeze time,” Jones said. After her daughter died, it became increasingly hard to remember how Skylar’s hair felt against her face or the sensation of holding her tiny hand. “Pictures help bring the memories back. They are like the external hard drive of your brain. The information is there, but it needs to be pulled forward. Those photos are a tangible way to hold on to memories so I don’t forget them.”
Jones wanted to help other families capture and preserve their life together, so she started offering a free portrait session to anyone with a terminal diagnosis. Her nonprofit, Love Not Lost, connects photographers to families and presents the diagnosed person with a photo book. “We want them to know they are important, loved, known, and understood. We hope the book will then be passed on to loved ones,” Jones said.
She also hopes Love Not Lost will inspire new, better ways to grieve. “Grieving is not something we do well, and I want to change that,” she said. “What made [grief] better for me was when people would sit with me and tell me they were sorry. I think that we are so afraid of doing or saying the wrong thing, but we really need to just show up and love people.”
That’s why she shows up with her camera in hand time and again, not only to bring purpose to her own loss, but also to provide comfort. “As someone who has been there before, I can honestly tell people, ‘It’s going to be okay. You’re going to survive,’” she said. “It’s a way to provide a little bit of comfort in the midst of a really dark place.”
Photography by Artem Nazarov and Tessa Marie
