listen and play
I was commissioned by a pharmaceutical company to photograph executives and patients for their corporate collateral and website. I flew to DC to photograph the executive director of the National Organization for Rare Diseases on the steps of the Capitol, and also a young girl with Morquio Syndrome at her home outside DC. I had learned ahead of time that the disease was very rare, and unlike some of the other MPS diseases, there currently was no treatment available. [MPS – mucopolysaccharidoses, involves not having enough of a certain enzyme to break down large sugar molecules.] While a clinical trial for Morquio Syndrome was about to begin, the family didn’t yet know if their daughter would be in the study group.
So, I’m at her home, not sure what to expect – the story I had been told was quite sad. Immediately upon arriving the four year old girl asks me to come play in her room. I take a few pictures of her with her mother on the stairs, and then we head to her room. She asks me to wait outside because “we’re going to play princess.” She had to change to her princess dress. Once invited in, I lie down on my stomach, camera in hand, and I listen.
She began bringing out her stuffed animals and telling me all about them – who was who – what their names were – what they liked. She pulled out a book and sat in front of me and read it to me. All the while I listened, photographing her. It was as if I didn’t have a camera in hand, that played no roll in our conversation, our play. It was just something I used once in a while. Reflecting on it, I wonder if she’d grown used to dealing with adults that had some other purpose, some other thing in their hand. She had undergone numerous surgeries already in her four years. But on that day, that didn’t seem to play a roll. To her she had loving parents, a sister who she adored, a room full of stuffed animals and books.
And, she had her princess dress. Before she climbed into bed for her afternoon nap, almost two hours after I’d begun photographing her, our time playing, she said, “How about we dance like a princess.” With her blue Cinderella dress, and no heed to her slightly deformed legs and feet, she began to twirl. Again, I listened, photographed and stayed with her – at that moment, she was a princess, you could never tell her otherwise.
I smiled and thought about her all afternoon – the only sadness that crept into my mind was wondering how long it had been that I had spent that much time on my own son’s floor – listening, and playing.
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