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

The pain, the tears, and the smiles hiding it all
By Kristie Fettig

People often see the smiles in the photos — the brave little girl with bright eyes, the mom holding it together, the family doing their best to make life look normal. But what they don’t see is the raw side of rare.

They don’t see the pain. The tears. The nights spent sitting on the bathroom floor, holding your child as they cry because their body is hurting again — and you have no way to fix it.

They don’t see the exhaustion that comes from watching your child fight a battle no one can name. The endless appointments, the blood tests, the waiting rooms filled with hope and fear all tangled together.

They don’t see the frustration when yet another doctor says, “Everything looks fine.”
Because it’s not fine.

Behind every rare disease diagnosis — or in our case, the lack of one — there’s a story of invisible pain and unspoken strength. There’s a child who’s learned to smile through discomfort because it never really goes away. And there’s a parent who has to smile too, even when they want to scream.

There are days when you feel broken — when you’d give anything to trade places, to take the pain yourself. Days when you question everything.
And then, there are moments of pure light.

A genuine smile. A good meal. A pain-free day.
Those are the moments that keep you going.

Because even in the rawest parts of this journey — the fear, the uncertainty, the helplessness — there is still so much love. There is resilience. There is faith. There is a quiet kind of joy that only comes from fighting through the hard days and finding beauty in the small wins.

The raw side of rare isn’t glamorous. It’s not what people post about on social media.
It’s messy, emotional, and often lonely.
But it’s also real — and it deserves to be seen.

So here’s to all the families living in the raw side of rare.
The ones holding it together with love, tears, and hope.
The ones smiling through the pain, not because it’s easy — but because their child deserves to see that even in the hardest days, there’s still light.