, , , , , , , ,

I know my daughter is stunning, the most beautiful person I have ever seen my entire life, although my husband is a close runner-up.

Early on, we knew that for a baby with an extra chromosome, Ellen was physically and cognitively in amazing shape, something that for a while baffled us but for which we felt extremely fortunate. We were so new to everything that Ellen brought into our lives — parenthood, extra chromosomes, sleep deprivation!

As a trained journalist, I was used to reaching out to people, and to try to figure out our new world, Ben and I met other parents of babies and older children with trisomy 21. Even though we have lived in different parts of the world in Ellen’s first six years — Germany, Iowa and now Hawaii — we are still in touch with some of these folks, and I will likely write about them down the road.

One of the most refreshing aspects of meeting these parents was the openness of our conversations. So often people who have questions about Ellen dance around them or are too direct! But with the parents Ben and I met, deep breaths were breathed, shoulders relaxed, laughter and a few tears were exchanged.

I remember one mother telling Ben and me, “I dread pictures of my daughter. I’m always seeing her extra chromosome right away. I don’t want to be this way. It isn’t fair to her.”

pumpkinI think about her honesty often, particularly when Ellen, who is in a an amazing mainstream first grade class in her school, has her picture taken with or without classmates. How quickly do I see her extra chromosome? Does it matter? Of course not. So why do I even think about it?

With all due respect to my immediate family, I sometimes heard as a teenager and in my 20s, “Oh, you look gay in that picture.” I took it in. While I would have many answers today for this kind of feedback, I didn’t back then. It hurt. I would never, ever, want Ellen to feel a whiff of disappointment from Ben or me about how her pictures come out.

While I should cut myself a break and know that I’m probably hoping that Ellen will fit in with her classmates, I’m checking myself to make sure it’s nothing more than that. She is gorgeous, and I always want her to know that.