Telling Your Child Not to Stare at My Child Isn’t the Polite Thing to Do
An open letter from the mom of a kid with a rare disability
I frequently sense that I am being watched. My son’s microcephaly (small head) and syndromic features stand out to passersby. His head is about the size of a nine- or ten-month-old so kids often mistake him as a baby, although he is too tall and skinny to be a baby. His almond-shaped eyes and low-set ears throw off the symmetry of his face. I think he’s absolutely adorable but I can certainly see why his appearance causes others to look longer than you might at your average four-year-old.
When I sense others lingering and looking at our family, it’s hard to not get stage fright. I fight hard to stay present, to not freeze up and draw inward. I want to remain friendly.
My son was born with a rare chromosomal disorder called Cri-du-chat syndrome which affects one in 50,000 babies. Cri-du-chat syndrome causes many medical complications and developmental delays. Bringing my son out in public also brings on many public stares.
When other moms see me with my son, I want them to think: I could do that, too.
