When your child passes away, the world doesn’t just get quieter, it changes. People often talk about the grief, the heartache, and the empty space where your child should be. But there’s another layer no one really warns you about: the way you start to feel invisible.

For me, it’s been especially true when it comes to medical conversations about Thanatophoric Dysplasia; the condition my child lived with. I once had a seat at the table in these discussions. I was living it every single day: learning the medical terms, asking the hard questions, advocating for care, and seeing firsthand what doctors’ decisions meant in real life. I was an expert, not in theory, but in love, survival, and experience.

But now that my child is gone, it’s as if my opinion carries less weight. Sometimes I feel like my voice is tolerated, not valued. People talk about the condition, about treatment, about outcomes, but they don’t turn to me anymore. My insight is treated like a memory rather than something useful in the present. And that stings. Because I know things that only a parent in the trenches could know. And I know them not from reading an article or attending a conference, but from holding my child’s hand through every breath, every scan, every hospital stay.

It’s not just the medical side, either. In everyday life, I notice it too; people forgetting to include me, leaving me out of conversations, moving forward as if my chapter is closed and filed away. I’m no longer the “special needs mom” in the active group chat. I’m not part of the medical support updates or the advocacy calls. It’s like I’ve been gently pushed to the sidelines because I no longer have a living child with the diagnosis.

But here’s the truth: I still belong.

I am still her mom.

I am still an advocate.

I am still part of this community, even if the world acts like my membership expired when my daughter took her last breath.

Grief doesn’t erase knowledge. Loss doesn’t take away experience. In fact, it deepens it. I’ve walked the entire path; from diagnosis, through the highs and lows of care, to the moment no parent wants to imagine. I carry lessons, warnings, encouragement, and truths that could help someone else navigate what I once did.

And yet, so often, I feel out of place, like I’m lingering in a room where everyone else has moved on. It’s a loneliness layered on top of the loss itself.

If you’ve lost a child, maybe you know this feeling too:

That strange sensation of being forgotten.

The way people stop asking for your opinion.

The way your presence feels like an echo instead of a voice.

It hurts, but it also reminds me why I need to keep speaking even if the room goes quiet when I do. Because my daughter mattered. Her life mattered. And what we went through together holds value that shouldn’t be tucked away in a corner.

To other parents walking this road: you are not forgotten, even when it feels like it. Your voice is still powerful, your perspective still necessary. You may feel out of place in the world now, but you carry something that can light the way for someone else and that’s a kind of belonging no one can take away.

Yours Truly,

Melissa