We are walking hand in hand, her small palm nestled snugly into my own, its weight a comfort I have come to take for granted. When she was born, I spent hours gazing at that palm, my eyes tracing the path of the crease that ran from one side to the other, the crease I could not find on my own upturned hand, the crease that served as one more “marker” for the doctors.
But I am not thinking about her simian crease, or about her diagnosis, or about those early years of wondering how she would change us and whether we could withstand it. I am simply feeling grateful for the early scent of spring, and the lingering glow of the sun, and that familiar warmth.
I ask, “So how was school today?”
I wait, having learned that sometimes another sentence will come, if only I give her the time. Sure enough, she says, “I worked on my research project.”
“What are you researching?” I ask. I try to sound casual, as if I am not greedy to hear more. This fourth-grade year is the first one when she has been willing, or able, to give me details about her day consistently.
“Down syndrome,” she says. “My big question that I wrote on my piece of paper is, ‘Why is Down syndrome scary?’”
“Huh,” I say, with a lump in my throat…(to read the rest of the article, click here)