A few months ago, I posted some photos on Facebook of Baby J that emphasized his long extremities: hallmarks of Marfan syndrome. One of my friends commented that it was interesting to see pictures of a baby with Marfan and she wished she had more pictures of herself as a baby. I have lots of pictures of myself as a baby, but not many that seem “Marfy” to me (though my parents didn’t know about my diagnosis at the time).
I love photographing Baby J’s Marfan features, from his long, flat feet to his pectus excavatum (indented chest). I realize this might sound odd, so allow me to explain.
Most of us with Marfan syndrome go through a period of time where we really stick out. This is usually during adolescence, when we’re most concerned about looking like everyone else anyway. When I was in middle school, I was nearly 6 feet tall and weighed 90 pounds. My pectus deformity made my breasts look weird. I was uncoordinated. People noticed, and not in a good way. I felt ugly.
As I got older I’ve gained some perspective, and I see the beauty in Marfan bodies. When I look at the little babies I see some of the cutest babies in the whole world. The teens are so graceful. I desperately want J to have this view his entire life and to never feel as ugly as I did.
I realize the world may look at some of these photographs and see something less than perfect. They may wonder why I focused on the “faults.” I know that as his mother, there will undoubtedly be a time that J will ignore my protestations that he is beautiful because I’m “just his mother” and I “have to say that.” My hope is that by having these photographs he will see I believed in his beauty so much that I made the time to document it for him.
How about you? Anyone else photograph what makes your kids stand out?