Let it be.

If I had to describe life with AHC in one word, it would be: unknown.

Unknown daily, monthly, yearly.

Will today be full of episodes, or will Archie surprise us by mastering a new skill?

Will we face a setback that unravels weeks of progress, or will he try a new food and swallow it safely for the first time?

The truth is, every day feels like a coin toss. And that unpredictability is the hardest part.

I see the reminders on social media every day:

“Soak up every second with your kids, they’re only little once.”

“Put down the laundry, you only get 18 summers.”

I understand the heart behind those words. I really do.

But sometimes, I wonder what happened to just being?

Maybe you didn’t take “five extra seconds” to squeeze your toddler because of a TikTok.

But maybe you sat on the deck, sticky hands and dripping ice cream, and didn’t think about anything else in the world.

That was enough. That was everything.

Motherhood doesn’t always need a countdown clock.

We dreamed of summers with the boys. Long beach days that turned into dinner by the ocean.

But we never imagined a life where the heat would send Archie into debilitating episodes.

Where instead of chasing waves, we’d be hiding in the air conditioning.

Where instead of savoring the moments, we’re counting down to cooler weather.

The hard truth is: we don’t know how many summers we’ll get with both boys.

That’s the reality no one prepares you for.

When your child lives with a condition like AHC, some days the picture perfect moments just don’t happen, and that’s okay.

Sometimes, when Archie is having a rare episode-free day, I feel this pressure to do everything. To run errands, to clean, to catch up — because tomorrow might be different.

It’s a race against the unknown.

But over time, and through the chaos, AHC has taught me something I never thought I’d learn:

To let go.

So instead of obsessing over the future or clinging to fleeting moments, I’ve learned to—

Let it be.

And no, I don’t mean living every moment like it’s a Hallmark movie. I don’t mean quantifying joy or over-analyzing presence. I mean truly surrendering to the moment.

Being here, even when it’s messy. Especially when it’s messy.

Life with AHC is unpredictable, but it’s also honest, raw, and often beautiful in ways I never expected.

And that’s more than enough.