It was a holiday. Outside, children spilled into yards and streets, running with sparklers, calling to each other, their laughter cutting through the warm air. Families gathered on porches. Everyone was celebrating.

My son was not outside.

He lay in bed, in a darkened room, unable to tolerate the noise, the light, the movement of his own body. The celebration happening just beyond our walls might as well have been on another planet.

So often, over the years since my children developed neuroimmune conditions, I felt hollow. There was a hole inside me that nothing could fill. I tried everything: distracting myself, contemplating gratitude, reading, and trying this and that. None of it worked. The pain remained and often grew bigger.

I once heard James Corden say something along the line of: "You can only feel as good as your child who feels the least good."

It felt so true it hurt.

That wasn't a comforting thought. It was simply the reality of what I was living. My child's suffering had become my own, not because I was enmeshed or codependent, but because I was their parent and they were vanishing in front of me.

What I didn't understand then was that I was carrying two forms of grief that have no name in conventional parenting advice: Ambiguous loss and chronic sorrow. But even those terms couldn't fully capture what I was living. What I was experiencing—what most neuroimmune parents experience—is something more than the sum of those two griefs. It is complex sorrow, the ongoing emotional terrain that emerges when you carry both identifiable losses and unclear, evolving losses across time, all while loving a child whose health and trajectory remain unpredictable.

What I desperately needed but didn't have words for yet........

© Psychology Today