The Raw Side of Rare: Hope, Hustle & Rowdie’s Hospital Halls. Unfiltered Mom Life, Medical Edition

Raising a child is never simple — but raising a child with a rare disease changes everything you thought you knew about parenting.

It’s doctors instead of playdates.
Hospitals instead of parks.
Questions instead of answers.

When you’re the parent of a “rare disease girl,” life feels like living in two worlds. On one side is the normal childhood every parent dreams of — birthday parties, sports, sleepovers, and growth charts that make sense. On the other side is the world of medical terms, appointments, insurance battles, and a kind of exhaustion that no amount of coffee can fix.

For me, that world began when Rowdie was barely two years old. Stomach pain, nausea, and vomiting became part of her daily life. She would nibble on food and push it away, whispering that her tummy hurt. She wanted to eat — she just couldn’t. Watching your little one refuse food not because she’s picky, but because it hurts to eat, is a heartbreak that words can’t really capture.

Doctor after doctor, test after test, and still no answers. “Everything looks normal,” they’d say, while my daughter cried in pain.
But how can everything be normal when your child is shrinking before your eyes?
How can everything be fine when she’s falling off the weight charts?

This is what it’s like to raise a child with an invisible, rare illness — you become both caregiver and detective. You learn medical jargon, keep detailed notes, and memorize every reaction, every symptom, every small change. You become the voice that won’t stop asking “why” when everyone else has stopped looking.

You also learn strength you didn’t know you had — and so does your child. Rowdie is the bravest little girl I know. She’s learned to smile through pain, to laugh in between tests, and to find joy in the smallest things. Her resilience reminds me daily that she’s more than her diagnosis — or lack of one.

Raising a rare disease girl means living with uncertainty, but also with extraordinary love. It means celebrating the smallest victories: a good meal, a pain-free day, a doctor who finally listens.

It’s not the journey I imagined, but it’s the one that has taught me more about courage, faith, and compassion than I ever thought possible.

If you’re another parent on this road — lost in the “rare” world, searching for answers — know this: you’re not alone. Your fight matters. Your child’s story matters. And even when it feels like no one sees what you’re going through, there’s a whole community of us out here walking the same path.

Together, we can make the rare a little less lonely.