They tell not to Worry. But I’ve Already Watched My Son Die Once.

The things nobody tells you about being a medical mama/parent

Next week, I’ll hand my son over to another team of doctors. And yes I have done this already once this year, but this time feels so much different because it won’t be exploratory, it will be to replace something….

I’ll kiss his forehead, tell him how brave he is, remind him that I love the heck out of him, and probably make some ridiculous joke to keep him from seeing just how terrified I am.

I’ll keep repeating it while they put him under. So, the last thing he hears, is me telling him I love him.

Again.

People tell me not to worry. They tell me he’s in good hands. To Trust In God. They remind me how far medical technology has come and how routine some of these procedures have become.

And I know they’re trying to help. Really I do. 

But here’s the thing.

I’ve already watched my son die once.

For 51 minutes, doctors fought to bring my baby back after his little heart stopped following his first open-heart surgery.

Fifty-one minutes.

Do you know how long 51 minutes is when you’re a  new mother waiting to find out if your child is going to live?

It’s an eternity.

And while the world has continued spinning since that day, while he has grown and come so far and is such a joy and such a miracle,  a part of me is still standing in that hospital, waiting for someone to tell me my baby is going to be okay. A part of me has never left that hospital in Houston. 

Now, years later, we’re preparing for another heart procedure.  The second of this year.  This time, Mason needs his pulmonary valve replaced.

The doctors have explained the procedure. They’ve walked us through what to expect. The plan is for him to spend one night in the ICU and hopefully be discharged the following day.

And medically speaking, I understand why they’re optimistic.

But trauma doesn’t always care about statistics.

Trauma remembers The conversations in hallways. The look on a doctor’s face before they say something that changes your life forever. The feeling of my entire world shattering in a way that isn’t repairable. 

And sometimes, trauma makes you afraid of things that haven’t even happened.

I wish I could tell you that after all these years, I’ve become fearless.

I haven’t.

I still get scared. I still imagine the worst. I still catch myself staring at my son a little longer than usual, memorizing his face, his laugh, and all the little things that make him Mason.

But here’s something I’m learning.

Being a brave mother doesn’t mean I’m not terrified. It means I’m terrified, and I’m still showing up.

I’m still packing the hospital bags. Still asking the questions. Still praying over my boy. Still trusting God, even when my hands are shaking.

And maybe that’s what faith really looks like sometimes.

Not standing confidently in the middle of a storm, completely unafraid.

But standing there with tears in your eyes, whispering, “Lord, I trust You. Please help me with the part of me that’s scared.”

I don’t know exactly how next week will feel.

I know there will be tears. I know I’ll pray more times than I can count. I know I’ll probably stare at my phone, watch the clock, and wish I could trade places with my little boy. I watched John Q when I was younger and suddenly that movie makes so much sense. Because it a heartbeat, I would give him my heart. Broken as it may be. 

But I also know this.

Mason is more than his diagnosis.

He is more than Tetralogy of Fallot. More than surgical scars, hospital bracelets, and medical charts.

He’s a little boy with big dreams, a beautiful personality, and an entire life waiting to be lived and a love of Taco Bell that is unmatched. 

And I refuse to let fear steal the joy of watching him live it.

Please Pray For Mason. 

Welcome to The Heart of a Medical Mama.

This is where we’ll talk about the beautiful, heartbreaking, messy, faith-filled reality of raising a medically complex child.

Not just the victories.

But the waiting rooms, the anxiety, the guilt, the exhaustion, the prayers, and the moments nobody sees.

Because our stories deserve to be told, too.

With love, faith, and a mama’s heart,

Tay