I walked into the funeral home not knowing what to expect. With Keisha by my side we scanned the room bursting at the seams with loved ones for the familiar face of Sofias mother Sue. She had asked me to come but I couldn’t lift my camera to my face until I’d seen her…until I once again received permission to document the most intimate of moments as I’d done for her countless times before. In the crowd was not only countless family members I had recognized from prior visits but many UCSF Benioff Children's Hospital staff who had cared for Sofia as well as both mine and Keishas girls. As our eyes caught theirs the notion that this…this is where we see each other outside of hospital walls…at the funeral of our children in which they devote their lives caring for hit me in a way I could have never imagined.
Sue spotted us and rushed over quickly instructing others to place chairs for Keisha and I in the very front. Oh Sue. The grace of that woman. Her embrace of us both was calming…in typical Sue fashion her desire was to comfort US and to thank US for making the trip. With her blessing to shoot we took our seats. One of Sofias brothers and his wife took to the microphone to start the service and slideshow. They explained the music choices…the choices that Sofia had made. Yes, Sofia chose the music for her funeral…she chose songs that echoed the love that she felt both for and from her family. I weaved in and out capturing the scene while also stealing moments of the slideshow for myself. I never knew Sofia prior to cancer and seeing the tumbling gymnast and long locks of black hair bounce around the screen engulfed me. She had a life prior to painstaking journey I’d witnessed and that life was being projected onto a wall.
At one point her face filled the screen and her voice the room…it was a cell phone video I assume one of her siblings had taken of her to be played at the service. A video of this precious little girl talking directly to her mom…thanking her for taking such good care of her, telling her how much she loved her and begging her to dry her tears. Every heart split wide open. With grief and with gratitude for having been touched by such an amazing little being.
As the slideshow came to a close family and friends approached Sofia one last time at her casket holding the body which could no longer carry her amazing soul. Some told stories of her, some to her, some just weeped…we all experience grief in such vastly different ways and every form was present.
Her brothers and sisters, extended family, gymnastics coach, teacher, best friend and countless others shared the love that those of us who stayed silent were surely feeling. Trying to put into perspective what I was documenting was all consuming…breathing through each click as I listened to and captured the weeping of a girl her age muttering “she was my best friend”. The courage that took, the overwhelming pain and inextricable loss that child will mourn into her adult life.
The reality of what pediatric illness does to a family has been mine for years, both through my own daughters journey and those that I document…but the reality of loss…of what losing a child to their illness really looks like has never been so close. Sofia you were my first to love and lose and sadly I know you will not be my last. Until there is a cure.
Click below to make a contribution in Sofias name. Your gift will go directly towards documenting future children at the centers in which Sofia was treated:
UCSF Benioff Childrens San Francisco and Kaiser Permanente Oakland.