Emmett’s Cardiac Quest

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Emmett’s Cardiac Quest

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Welcome to Emmett’s heart warrior journey❤️‍🩹

Emmett was born with severe Ebstein’s Anomaly, a congential heart defect which affects 1 in 200,000🫀

09/20/2023-09/01/2024🕊️

Take life at a snail’s pace🐌

https://linktr.ee/emmettscardiacquest

07/24/2025

It’s been 325 days since I last held you. And still, every single day, I’m reminded in a million little ways how much brighter the world was with you in it.

I’m reminded of all the hope we carried for the future, especially when I watch Oliver playing monster trucks. I never imagined he would be playing alone. He still loves dinosaurs, but his world is expanding. Lately, he’s been into Scooby doo. I wonder if you’d play with him or if you’d be more drawn to the ocean animals. I wonder if you’d love bugs and snakes like he does or be more like mama, loving them from a distance.

He talks about you every single day. Every single night, he grabs your special bear before bed, like it’s part of the rhythm of loving you.

I’m reminded when I only have to make one snack plate, what feels like just 20 minutes after lunch. There’s no arguing over which movie to watch next. I always imagined a debate between Finding Nemo and Toy Story. I know you’d choose Nemo.

Every little thing about Oliver reminds me of you. And I’ll always wonder who you’d be outside the hospital walls.

I feel it when I’m holding my niece and realize the last baby I held was you. My sweet, sweet boy. It was four months before I could even pick you up on my own, without nurses or respiratory therapists by my side. Four months before I could hold you freely… and the last time just replays over and over in my head.

I feel like so much was stolen from me. From all of us. You deserved so much more. You should be here, baby.

07/18/2025

💔

07/17/2025

I am so angry at this world. Angry that it keeps spinning, blooming, growing when it shouldn’t. Not without Emmett. How can the flowers keep blooming when he never got to run through them? How can the grass stay green when his feet never touched it? How is the sun still shining when my baby is gone?

I walk outside and everything looks alive. And all I can think is how? How is anything alive when Emmett isn’t? I want to rip every blade of grass out of the ground. I want to scream at the sky until it breaks. I want to turn off the sun, just to show the world what it’s like to live without its light. Because that’s what happened to us, our light was taken.

There is no brightness in our dark days. There is no peace in the wind or beauty in the blooming trees. Not when Emmett never got the chance to grow alongside them. Not when the world gets spring and summer and sun… and I get silence.

He should be here. And I’ll never stop being angry that he’s not.💔

07/14/2025

I wish I could explain how much I miss my baby. I miss him more than anything, more than I could ever put into words. He deserved so much more.❤️‍🩹🐌

07/09/2025

I’d give anything to get you ready for bed just one more time. To hold you, tuck you in, and kiss your forehead. I still can’t understand how this is real.💔🐌

07/06/2025

I wanted to share something incredibly special. A fellow heart mom, Christine, created a beautiful book in honor of her son, Taige and she’s opened her heart even further by offering to personalize it for other families too. She made a custom version just for Emmett, with his specific heart condition woven into the story. It’s truly a treasure to have something so special made just for him.

If you have a heart warrior and would love a personalized story made just for them, you can reach out to Christine at braveliketaige@gmail.com or join the Facebook group Brave Like Taige Book!

Thank you so very much, Christine, for our absolutely perfect book for Emmett. It means the world to us.❤️💙

07/03/2025

Losing a child is like being dropped into a world that looks the same, but nothing feels real anymore. It’s waking up each day with a pain so deep it doesn’t have a name. Something that feels far beyond grief, beyond heartbreak. It’s like trying to breathe with a collapsed lung. You’re still here, but a vital part of you is missing.

It’s silence where there should be laughter. It’s toys left untouched, clothes that still carry their scent and stains, and plans that will never come to be. The future you imagined is gone, and in its place is a void that nothing else can fill.

It’s closing yourself off from the world, not because you want to, but because you simply can’t find the strength to speak. Sometimes for a day, sometimes for a week. There are no words, no energy, no ability to explain the weight you’re carrying. You can’t even mask it for a second. It’s feeling completely untethered in a world that used to feel like home.

It’s people moving on all around you while you’re stuck in that moment, screaming on the inside. It’s isolating. People might try to offer comfort. Some will say “they’re in a better place” or “everything happens for a reason,” but those words can feel hollow, even hurtful, because there is no reason good enough.

It’s reliving moments over and over, wondering if you could’ve done something different. It’s guilt. It’s rage. It’s sorrow. It’s love that has nowhere to go. It’s missing someone so profoundly that even joy feels heavy, because they aren’t here to share it. Your soul is dark and crushed. You feel like a shell of yourself.

And in your mind, there is no silence. Just a constant hum of static and racing thoughts. Even in moments of stillness, your brain won’t rest. It’s like your mind is stuck on repeat, cycling through everything you’ve lost, everything you wish you could change. There’s no pause, just constant noise.

Grief isn’t about moving on. It’s learning how to live with the weight of what’s missing. It’s holding onto their memory in all the little ways you can, grabbing that sweet stuffy that still feels like it did when you laid it beside them in their hospital bed, or coming across a book you would’ve reached for without hesitation just last year to read at bedtime… a book you can barely look at now. It’s surviving the long days not because the pain has lessened, but because your world demands it. Because somehow, you have to keep going, even when it feels impossible.

There’s no roadmap for life after losing a child. It reshapes you in ways even words can’t reach. If you’re standing beside someone who’s grieving, let them be real. Be patient with their pain, their silence, their sorrow. Let them speak their child’s name. Let their tears fall. Your presence may be quiet, but your kindness will mean more than you’ll ever know.

We are holding space in our hearts for every family who has lost a child, and for all those who continue to survive every single day as bereaved parents.

06/29/2025

Yesterday marked 300 days without Emmett.

Three hundred days of waking up in a world that no longer makes sense.
Three hundred mornings where even the first breath hurts.
Three hundred nights without his big, beautiful smile. Without his perfectly imperfect heartbeat.

I still don’t know how we’re surviving this. I don’t know how we’re still standing.
Every day feels like a nightmare I can’t wake up from. A thick, endless fog.

We always tell Oliver how much Emmett loves him. That he’ll always be his baby brother. That he’s still the best big brother in the world.
But inside, I’m breaking. Because they should be growing up together.

I would give absolutely anything for just one more second.
One moment to hold them both.
To rock Emmett.
To kiss his little cheeks.
To hear them both talking and laughing side by side.
Just one second where my heart could feel whole again.

The thought of living a lifetime without him
is unbearable.
It makes me sick.
It takes the air from my lungs.

I still can’t believe this is real.
And I don’t think I ever will.

Address

St. Louis, MO

Telephone

+13143055677

Website

https://linktr.ee/emmettscardiacquest

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