Adventures in KAndylaND

Behind every special needs parent who “can’t keep a full-time job” is a second, invisible one.

Beyond the therapies and doctor appointments lies a full-time role as administrator—managing paperwork, appeals, medical forms, waivers, and deadlines that determine whether vital services continue or disappear. Even in families with support systems, this unseen labor quietly shapes careers, schedules, and financial stability.

This post offers a 48-hour window into that invisible work—and asks a bigger question: not why special needs parents struggle to stay employed, but why the system requires them to hold two full-time jobs just to survive.

Every year since 2008, Rare Disease Day is celebrated all around the world. Since February 29th is the "rarest day" on the calendar, it was chosen for that date. Most years, like this year, it is celebrated on February 28th instead. It was created by EURODIS and the Council of National Alliances to spread global awareness and bring rare diseases to the spotlight. I have been celebrating it for the last several years to bring the spotlight to my own kids' rare disease, Neonatal Diabetes.