The last time I saw her, she was pedaling away from me on her way to her best friend's house. I watched her thin legs and frail knees and ankles propel her forward on her bicycle. The wind she created with her speed would have blown back her hair had it been long enough. She looked like she felt free.
Two years earlier, she had hair down to her waist. She shaved it to prepare for her first surgery. After six rounds of chemotherapy, she had another surgery. Then eight rounds of chemotherapy. Then another surgery. More treatment.
The last time I saw her, her hair was maybe two inches long. It wanted to make waves over her head and didn't quite have enough length. Instead it wiggled and stood awkwardly at attention. She was so happy to have it, and it was beautiful.
She was overjoyed to be home from the hospital. Six months prior, she and her family traveled to a cancer treatment facility 1,300 miles away for a three-month experimental treatment. It looked promising.
The cancer returned. For nearly three years she had lived the life of a cancer patient with its grueling schedule of injected poisons and evaluations. She found beauty and joy every day.
Her parents told me repeatedly that her refusal to live anything other than a full life was one of the most difficult aspects of her journey. They were heartbroken to know their daughter was living with immense pain - headaches, joint pain, jumbled thoughts, digestive distress. They were elated to see her embrace as much of the carefree life of a 10-year-old as was possible and simultaneously crushed to know that kind of freedom in childhood would not be hers.
She made it herself. She took it. She owned it.
The last time I saw her was her last day. She visited with her best friend for a few hours. She rode her bike home and enjoyed dinner with her family. She played her favorite board game, Monopoly, with her sisters and parents, while her cat sat on her lap.
She went to bed. Her parents kissed her goodnight.
More than 300 people attended her memorial. It was a moving service with stories from her teachers, friends, and family. They hugged and wiped away tears. They stared at their shoes. They talked about how much she would have enjoyed riding her bike on that day, which was unusually dry and warm for February. They looked at the pictures of her on display and replayed the moments in their lives they were fortunate enough to share with her.
I saw all these things, and photographed all these moments. I captured the confusing emotions people struggled to find ways to express. I made art of their love.
This family invited me to be a part of their journey shortly after her diagnosis. I was a part of their "after." I attended family events and celebrations. I was there for school plays. I came to doctor's appointments and visited during treatment. I saw her last bike ride. I photographed that, not knowing it was her last day.
It's been two months since her death. Her mother called me this week and asked me to visit. She and her husband were ready to look through her final photographs - from her last day, funeral, and cremation.
I wish I could find a way to describe how it feels to sit with parents in this way. I wish I could find a way to describe how much it means to be to be invited. I wish I could find a way to relieve the smallest bit of suffering. I wish I had a number to count the tears that fall.
I wish this place didn't exist, and yet I can't imagine myself anywhere else. I know from the backbreaking hugs I received that I am in the right place. I know from the clammy pressure on my hand that my view of their lives means something to them.
I wish I didn't know, and yet I am grateful I do.
I see a lot of incredible moments of the human experience while being with families in love and grief. From each family I learn, and those lessons and points to ponder are what I wish to share with you here.