There are a lot of things I wish people understood about this journey.

Not because anyone does anything wrong…  

but because unless you’ve lived it, it’s hard to truly know.

I wish people understood that even on the good days…  

there’s still a weight that never fully goes away.

You can be smiling, laughing, watching your child play…  

and still have this quiet thought in the back of your mind:

What if something changes?

I wish people understood that “he looks fine” doesn’t mean everything is fine.

Benjamin looks like a healthy, happy 3-year-old.  

And in so many ways, he is.

But behind that smile is a little body working so much harder than it should.

There are labs we watch closely.  

Numbers we memorize.  

Changes we notice that no one else would.

I wish people understood how much waiting becomes part of your life.

Waiting for updates.  

Waiting for labs.  

Waiting for the call.

Waiting for something that could change everything at any moment.

And I wish people understood how complicated hope can feel.

You want to stay hopeful.  

You need to stay hopeful.

But hope also makes you vulnerable.

Because when something doesn’t work out—like getting all the way to the OR and having surgery canceled—it hurts in a way that’s hard to explain.

You learn to hold hope carefully.

To believe… but also protect your heart.

Most of all, I wish people understood how strong these kids are.

Benjamin doesn’t wake up thinking about diagnoses or lab values.

He wakes up ready to play.  

Ready to laugh.  

Ready to live.

And watching him… reminds me to do the same. And that God has a plan and perfect timing for his new kidney. 

So if you’re reading this, the biggest thing I would want you to know is this:

Your support matters more than you think.

Your prayers matter.  

Your messages matter.  

Your shares matter.

Because this journey can feel really heavy sometimes…

and knowing we’re not walking it alone makes all the difference.

💚