"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 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."
A parent endures deep, persistent emotional pain while caring for children with neuroimmune conditions. One child withdraws indoors during celebrations, unable to tolerate sensory input, while family life continues outside. Repeated attempts at distraction and gratitude fail to fill an expanding hollowness. The child's suffering becomes the parent's, intensifying grief. The experience includes ambiguous loss and chronic sorrow but extends beyond those labels into complex sorrow: a continuous emotional landscape of both clear and shifting losses across time. The parent seeks permission to acknowledge this burden and a practical practice to bear unbearable moments.
Read at Psychology Today
Unable to calculate read time
Collection
[
|
...
]