When the hard days hit (and keep hitting)

Hey Warriors,

Right now, as I write this, I’m in the hospital again. Water retention. Alarms. Fatigue so heavy it makes my skin feel tight. This isn’t the shiny part of the journey, but it’s real. And it’s mine.

Living with an LVAD means giving up some things most people don’t think twice about. Like swimming — oh, how I miss the freedom of just floating, being weightless, letting the water carry me. My body now comes with cords and bags and rules. I don’t just “jump in” anymore. I have to plan, protect, pause. Always pause.

And I’m tired. Not just sleepy-tired, but bone-deep, soul-heavy tired that doesn’t shake off with coffee or rest. The kind of exhaustion where even brushing my teeth can feel like a full task list. And still, I show up. Somehow.

Then there’s the water. The swelling. The endless cycle of up-down blood pressure and ER visits that steal time I’d rather spend anywhere else. It’s frustrating. It’s scary. Sometimes it’s isolating.

And yet, there’s always still something.

Something small. Like the way sunlight pours into my hospital room for just a few minutes each morning. Like the beautiful skyline outside my window. Like hearing my kids’ voices on speaker, giggling like the world isn’t heavy at all. Like catching a breath between alarms, long enough to close my eyes, even if that alarm screeches the second I do because my blood pressure decides to climb at the worst moment. (Yes, LVAD, I heard you.)

Some days, I’m not inspiring. I’m just surviving. And that’s okay.

Because Little LVADventures isn’t just about the cute parts. It’s about the true parts. The grit. The grief. The grace. The fact that even when I’m hooked up, worn out, and honestly kind of over it, I still find pieces of joy.

If you’re here in the thick of it too, I see you. If you’re tired of pretending it’s all fine, me too. And if you’re still holding on to something beautiful in the mess? That’s the magic.

More soon, but for now, I’m resting. Or at least trying to. (Quiet down, LVAD.)

“Some days, I’m not inspiring. I’m just surviving. And that’s okay.”

With Heart,

💙 Phoenix