This evening brought us right back to a place we know all too well — the emergency room. Robert’s breathing had become harder, his tiny chest and belly working overtime just to move air. For any CDH (Congenital Diaphragmatic Hernia) parent, that moment is unmistakable — the one where your heart drops and instinct screams something isn’t right. You don’t second-guess it. You go, because waiting could cost too much.
We spent hours in that ER tonight — waiting, worrying, watching monitors blink as if they might somehow reveal what was wrong. Robert lay there, exhausted, while we waited for tests and answers. An X-ray was taken. His oxygen levels were tracked. His breathing was watched. And then… we were told to go home.
No clear reason. No explanation. Just, “Keep an eye on him.”
That’s it.
But that’s not good enough.
We don’t take our child to the ER for “just nothing.” We don’t subject him to the chaos, the bright lights, the noise, and the fear unless something feels seriously wrong. And yet, we walked out tonight with the same worry we came in with — only heavier.
The Weight of Not Being Heard
It’s a particular kind of heartbreak — the feeling of not being believed when you know, deep down, that something isn’t right. When you’ve lived this journey long enough, you start to know every nuance of your child’s body — the way they breathe, the sound of their cry, the rhythm of their sleep.
Parents of medically complex children become their fiercest advocates — not by choice, but by necessity. You learn the language of medicine because you have to. You piece together patterns because no one else seems to. You see the dots that others miss, and when those dots form a picture of concern, you raise the alarm.
And when that alarm is met with indifference, it’s crushing.
We are not doctors, but we are the experts on our child. Robert deserves to be taken seriously every single time. He deserves a system that listens — that doesn’t make families feel small or overreactive for seeking help.
Home, But Not at Peace
Now we’re home again, sitting in the dim light of the living room, counting breaths. Watching his chest rise and fall. Listening for any change, any sign that things might be getting worse.
We are grateful — truly grateful — that he’s stable enough to be here instead of in a hospital bed. But that gratitude exists right beside fear. Fear that we might miss something. Fear that the next breath might be harder than the last. Fear that we’ll end up back in the ER — or worse — because “keep an eye on him” wasn’t enough.
It’s exhausting — not just physically, but emotionally and spiritually. This kind of exhaustion seeps into every part of you. It’s the fatigue of constantly being on alert, the weight of never being able to fully rest.
The Strength of a Parent’s Love
And yet, we keep going. Because love doesn’t rest. Because when you’ve watched your child fight for every breath, you learn what strength truly is. You find it in the spaces between fear — in the prayers whispered at 2 a.m., in the steady rhythm of counting breaths, in the silent promises you make to keep fighting for answers.
Tonight, we’re clinging to hope and faith — fragile but still burning. Robert is sleeping now, his small body finally still, and we’re praying that tomorrow brings clarity. That someone, somewhere, will listen. That this isn’t another round of uncertainty without direction.
To those who have been walking this road with us — thank you. Your prayers, your messages, your compassion mean more than words can express. Please keep Robert in your thoughts and prayers as we face yet another long night of watching, waiting, and hoping.
He’s stable. He’s home. But he’s not out of the woods — and neither are we.
We’re holding onto faith, one breath at a time. 💛
