For Heather Lanier
, whose daughter Fiona has Wolf-Hirschhorn syndrome
, there’s a big difference between living “in here” and “out there.” She writes, “In here
applies little pressure. In here
asks no questions. In here
often lets you and your kin be as you are.” But “out there,” Ms. Lanier and her daughter face physical obstacles — like narrow doorways and steep stairs — and people’s stares, excessive concern, and harmful questions. Most exhausting, they have to perform happiness. They have to smile all the time.
“You ask: Am I happy? I say, sometimes less than before. Because she wakes six times a night. Because regular trips to pediatric specialists are no strolls through the park. Because special educators sometimes see her as broken, in need of fixing. Because her needs often exceed my energy. Because every time I’ve hovered above her convulsing body at night, counting the minutes, I might have gained something like courage or ‘life experience,’ but I also felt gashed in a bodily place that I can’t find, I can’t name. Because loving someone has never been so hard.” (21 min)