Sofia. My sweet Sofia. I remember the day I met you, I approached your closed hospital door and it’s glass greeted me with a life size Moana decal. There was a collage of images showing your transformations with your name emblazoned across. I stopped and held my gaze on each picture…studying you…moving from photo to photo…watching a bit of your story unfold on that construction paper. The physical changes in you looked as if they happened so fast but for you I knew they had happened slow…I knew that you had endured a long road. I watched the progression of your illness take their toll it’s your body one frame at a time silently wishing that this was not your reality. I wanted to know you before I even opened the door and in truth I felt like I did.
You won my heart that day. You were so full of life. We discussed nail art and pop music and most importantly our mutual agreement on the dreaminess of Dr. Wahlstrom. I mean…those eyes. You filled me in on the other UCSF staff gems…you listed off the cutest nurses and provided me with the details on the adorable ENT. Because yes when your 9 and have cancer having a smoking hot Ear Nose and Throat Specialist is considered a win. You posed and directed yourself as though we were behind the scenes at fashion week. Your body had it’s limitations but your imagination did not. You told me of the time you got Dr. Wahlstrom to dance with you and even broke into a full song and bed-ridden dance rendition of the moment. It was magic. All of it.
You invited your mom to sit with you on the bed and with each click of my shutter you would make a different expression at her and narrate along. “This is my flirty face” CLICK…”This is my teenager face” CLICK…”This is my sweet face” CLICK. Your mom just stared at you longingly…beaming with pride over her sweet spirited and feisty girl.
You then placed your hands on each of her cheeks…your expression changed once again this time into a more "matter of fact" gaze…with her face held in your hands you lowered your head and voice looked her right in the eyes and muttered…”This is my I don’t want to die face” CLICK.
I will never forget that moment. I have no words to describe the way my heart broke open when that shutter closed but I have the image.
In the weeks that followed I have continued to come and see you. You're fading fast now but I'm sure it feels slow. With every visit I add frames in my mind to the originals I studied outside your door. I still want to know you…I will always want to know you. I will document your beautiful spirit for the rest of your life and be forever changed by of it for the rest of mine.