My Son Has a Rare Syndrome. So I Turned to the Internet.

April 22, 2025

Cell phone showing tiktok logo

(New York Times Magazine) – Social media became a place of both solace and torment. How much was mine to share?

The urge to consult my phone overpowered me. I could already perceive how it was mediating my relationship with my son, the way it could smudge the lines between privacy and shame, representation and exposure. It might unlock a private community of recognition and solidarity, then lead me to a kind of medical show-and-tell that shaded into exploitation. It might serve me the precise steps for a lifesaving protocol one day and a vaccine-related conspiracy theory the next. But I could not resist its call, because in order to prepare myself for my child’s arrival, I required materials that it, and only it, could provide.

My desperate searches were aimed at a rare complication, but they scratched at an essential itch: to join, share, comment, photograph and snoop on my child before he was even born. (Read More)