Lucy

Sleep is meant to be basic. Essential. One of the few things you should be able to rely on, even when life feels uncertain. But for many families raising a child with complex needs, sleep does not feel basic at all. It becomes something fragile. Interrupted. Negotiated in fragments. Measured in alarms, panic, repositioning, seizures, and the long wait for morning. For our family, nights are shaped by the reality of raising a child with epilepsy, cerebral palsy and autism. Add severe sleep...

I am a parent of a child with additional needs. I am also the co‑founder of My Penelope , a digital tool built to help parents navigate the SEND system, keep track of provision, and avoid falling through the cracks. I live in both worlds every day: the emotional reality of parenting a child with significant needs, and the systemic reality of trying to make a failing SEND system work. That is why I am deeply concerned by the direction of travel in the current SEND reform proposals . Monday’s...

Every year, Purple Day invites the epilepsy community to pause, reflect and reconnect. It is a chance to remind ourselves—and the world—that while epilepsy may shape parts of our lives, it does not define our potential. This year’s theme, “If I can, you can,” resonates deeply with me. Over the last year, as we’ve learned more about Penny’s epilepsy, her medication, and its impact on her daily life, I’ve found myself reflecting—really reflecting—on my own journey. A Childhood of Seizures and...