Confessions of a Rare Disease Mama

Send us Fan Mail There’s the physical work of caregiving… and then there’s everything happening inside your head. In this episode, I’m talking about the invisible mental load that comes with being the primary caregiver to two medically complex children — remembering medications and doses, tracking symptoms, scheduling appointments, coordinating specialists, managing nursing, ordering supplies, dealing with insurance and Medicaid, communicating with school and therapists, keeping up with equip...

Send us Fan Mail Just when you think you’ve made peace with your life, grief comes barreling back into the station. All aboard! This weekend was a really good one. We had family in town, celebrated birthdays and baptisms, spent time with people we love, and watched all the cousins together. And somewhere in the middle of all that joy, I realized I was struggling. Watching kids around Roman and Stella’s ages run around, play together, and experience childhood in ways my kids can’t brough...

Send us Fan Mail When your child receives a life-altering diagnosis, you leave the hospital with a care plan. ...But no one gives you a coping plan. In this episode, I’m talking about the part no one prepares you for: the emotional aftermath of becoming a medical parent overnight. The grief, the anxiety, the constant fear… and the expectation that you’ll somehow carry it all while staying strong for your child. We talk so much about treatments, therapies, and survival, but almost nothing abou...

Send us Fan Mail The holidays can feel magical... or overwhelming. For parents of children with medical complexity, special needs, or chronic illnesses, the season often comes with invisible burdens and unspoken expectations. In this episode, I talk about the weight of the “shoulds” we place on ourselves: the traditions we think we have to do, the perfect holidays we imagine, and the grief that surfaces when reality doesn’t match our expectations. Together, we explore how to: Acknowledge the ...

Send us Fan Mail After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories. We open up about: 🚗 The three road trips that (at times) tested our sanity, but ...