[MPW66] Amazing Grace

After 48 hours of deflated morale and crushed spirit, I knew things were gonna fly when I finally met 13 year-old Grace Cogan. Despite being born with Goltz syndrome, a rare multi system disorder which has left her hearing and visually impaired, and with other birth defects, she has grown up to be a fine girl with big dreams of becoming a historical fiction author. 

I highly suspect that many of us actually feel like I do when I meet someone with special needs; someone who differs from societal norms and expectations of functionality and beauty. How should I behave around them? Should I do/not do something lest it offends them? Where is that fine line between being sensitive to their limitations yet not be so presumptuous and treat them as subhumans? I struggle with that a lot. 

But meeting Grace has opened my eyes. Shadowing and interacting with her in the past week has definitely helped me get a better sense of how she’s like - actually much like who I (and probably many of us) was very many years ago. She loathes Maths, I never liked Science; she gets touchy when her mother disturbs her, I did too! Grace loveeees to read. Quiz her anything about American history and she will share with you everything you want to know. I was, and still am, quite the bookworm too. 

Gracie is a fighter. She really is. And I’ve so much respect for her indomitable spirit and resilience for life. She’s gone through surgeries after surgeries, tons of visits to the doctor, lived through and is still living through pain from her condition. But she’s not let it eat at her. I’m not sure I can be half the person she is, had I been born to the same circumstances as her. This one week at Missouri Photo Workshop has been very precious to me. I’ve learnt so much about story telling, met a class full of talented and good-hearted photographers, got inspired by the faculty (big shout out to Brian Kratzer and Lois Raimondo who were extremely nurturing!!), and got to be a tiny part of Grace’s life. I just pray that God will always keep this little girl in His favour and that our paths will cross again some time in the near future.

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