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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 was not another coping strategy. It was permission to acknowledge the weight of what I was holding and a practice that could help me weather the times that felt unbearable.
Of course, parenting any child with special needs can be painful and complex. Parenting a child with a neuroimmune condition is a different terrain entirely. It is living inside a landscape where the only reliable pattern is instability. Symptoms can shift without warning, triggered by germs, pathogens, stress, environmental toxins, and other factors we can rarely anticipate.
We rarely speak about what this journey costs parents emotionally. Many carry layers of grief that go unseen, while being told they simply need better coping skills.
Over many years, in my own life as well as in my work with families navigating chronic neuroimmune adversity and complex trauma, I found that conventional self-compassion practices were often inaccessible. Well-meaning guidance did not always meet the nervous system where it actually was. Out of this need, I simplified the theory into an approach that can be used even in moments of overwhelm. I call this intentional self-attunement. It is a way of turning toward oneself with precision and attention that is realistic and adaptable in the context of CPTSD and ongoing uncertainty.
What Is Ambiguous Loss?
Pauline Boss described ambiguous loss as losses that are unclear, shifting, and impossible to fully grasp (Boss, 2006). For parents of children with neuroimmune conditions, this manifests uniquely: Your child is here, yet the child as you knew yesterday may not be accessible today. The loss can be invisible to everyone else.
The grief is compounded by the fact that no one outside of neuroimmune parenting typically recognizes or understands it. There is no acknowledgment that something profound has been lost.
Parents exist in perpetual mourning for something that may return tomorrow or may never come back. They must keep functioning, keep parenting, keep advocating, all while carrying a sorrow that has no solace.
Boss describes this as “frozen grief”: a lack of certainty, resolution, or closure regarding the loss that cannot be resolved because the loss itself is unresolved (Boss, 2006).
What Is Chronic Sorrow?
Susan Roos described chronic sorrow as grief that does not resolve or end (Roos, 2002). It recurs throughout a lifetime in response to new losses and ongoing uncertainty.
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Chronic sorrow is not depression. It is not a failure to “move on.” It is periodic and pervasive sadness or grief response that is without end, associated with an ongoing living loss or disparity.
And yet, parents are expected to function as if this grief does not exist. They are expected to stay positive, remain hopeful, continue fighting. No one acknowledges that parenting a neuroimmune child means living with sorrow that does not have an endpoint.
Complex Sorrow: When Two Forms of Grief Describes Neuroimmune Parenting
Complex sorrow is the landscape of pain of the ongoing emotional terrain that emerges when you carry both identifiable losses and unclear, evolving losses across time without knowing if, when, or how it will end. At its core it reflects persistent pain shaped by unfolding unclear loss (Gertel Kraybill, 2025).
Here’s what makes complex sorrow distinct:
Complex sorrow…
- is not episodic. It becomes the emotional atmosphere you breathe.
- includes constant dread and ongoing, futile scanning of the environment for what may emerge at any moment.
- reflects cumulative identity transformation. The parenting experience you believed you would have becomes something very different and marked by pain.
You carry sorrow while fighting for your child and while researching treatments.
You move between agony and cautious celebration of small progress that may disappear the next day. It coexists with love, devotion, and the relentless work of caregiving.
Why “Sorrow” Instead of “Grief”
For neuroimmune parents, both grief and sorrow coexist. Grief names the losses. Sorrow names the weight of continuing to live with them.
When they exist together, they create an emotional landscape that is enduring, layered, and identity-shaping. This is something you learn to carry.
What Neuroimmune Parents Need to Sustain
Neuroimmune parents are sustained by recognition that what they are living through is profound, layered, and ongoing loss. They are strengthened by space to grieve without pressure to stay positive. They are steadied when complex sorrow is understood as a natural response to relentless and unpredictable circumstances. They are supported by Intentional self-attunement, a compassionate way of turning inward to notice, name, and hold their emotional reality while caring for a child whose needs are immense.
Living Alongside the Pain
The traditional triad of self-compassion includes mindfulness, common humanity, and self-kindness. For many of us, common humanity is the most approachable entry point; recognizing that suffering is part of being human helps counter the isolating belief that “I’m the only one.”
Mindfulness and self-kindness can be harder to access. This is where intentional self-attunement becomes essential.
When we try to fix how we feel, our body receives the signal that something is wrong, creating more tension. When we practice self-attunement instead, the opposite happens: Breath deepens, awareness widens, and the nervous system begins to move toward regulation.
Intentional self-attunement (Gertel Kraybill, 2025) is a practice of turning inward that expands the capacity to endure pain and also experience joy. It begins with a deliberate pause, an interruption of automatic doing, followed by purposeful attention to your internal state. This attention is offered without judgment. It is similar to looking out a window to observe what is happening outside, only the observation is directed inward.
The practice involves intentional noticing that leads to recognition and naming of what you feel. Rather than reacting to these feelings, you respond by choice and without self-criticism. It concludes with seeking connection to a sense of safety in the present. This is not always available, since we are not always safe. Yet in the moments when safety is present, we can allow ourselves to feel it.
In complex situations like neuroimmune parenting, healing isn’t about eliminating pain. It’s about expanding our capacity to hold it all—the terror and the love, the exhaustion and the meaning—without being consumed by any of it.
This doesn’t erase pain, but it expands our capacity to hold it without being overwhelmed. Over time, the nervous system learns that being with our experience, however painful, is survivable (Gertel Kraybill, 2025).
Take a look at the image to learn and practice ETI Intentional Self-Attunement:
Complex sorrow lives with you, but it is not the whole of you. Intentional self-attunement creates small pockets of breath where your system can soften and remember safety. These moments do not fix what feels impossible, yet they make it possible to continue.
