Grief as a Constant Companion - The Presence of Unseen Mourning


Grief as a Constant Companion

The Presence of Unseen Mourning

It begins in the quiet, a moment so small you almost miss it. I’m sitting in a sterile exam room, the fluorescent lights buzzing faintly overhead, my daughter’s tiny body cradled against me. The doctor murmurs words like hypotonia and aspiration pneumonia—but they meant something simpler: uncertainty, risk, fear. Her eyes—bright, nystigmusly searching—meet mine as if to ask a question neither of us can answer. The grief arrives then, not as a sweeping wave but as a seeping pool, bubbling up in the hollows of my chest. It’s not the grief of a gravestone or a final goodbye. It’s something murkier, something society doesn’t name: the mourning of a life that might never unfold as I’d dreamed, a future I can’t predict or protect her from. This invisible presence, accompanied by countless others, walks with me, binding love to loss in ways the world rarely sees. A grief unseen, unspoken, uninvited, and unresolved.

The psychologist Pauline Boss calls this “ambiguous loss,” a term that feels both precise and inadequate. It’s the loss of what could have been—first steps that may never come, birthday parties replaced by hospital stays, a voice that might remain silent—while the child you love is still here, breathing, smiling, needing you. There’s no closure, no ritual to mark it, just an endless adaptation to a reality that shifts beneath your feet. How do you mourn what never was? How do you grieve a possibility when the person you adore is still warm in your arms?

This is the silent burden of disenfranchised grief.

Society reserves its sympathy for losses it can see—caskets, eulogies, two black Cadillacs driving in a slow parade. But for parents of medically complex children, especially those with rare or undiagnosed conditions, the grief is disenfranchised, tucked away in the margins of acceptable sorrow. Friends don’t send cards for the day you realize your child won’t run with the others at the park. There’s no Hallmark aisle for the night you sob into a pillow after another specialist shrugs and says, “We just don’t know.” The world moves on, celebrating its milestones, while you learn to measure joy in milliliters of medicine administered without a fight or a rare hour without a seizure.

Joan Didion understood this kind of grief, the kind that doesn’t march in straight lines. In The Year of Magical Thinking, she writes of losing her husband suddenly, yet her words echo here too: “Grief turns out to be a place none of us know until we reach it.” For me, that place is a shadowland where love and loss coexist, where I mourn the child I imagined while fiercely cherishing the one I have. It’s a grief that doesn’t resolve—it accretes, layering itself into the rhythm of our days. Venting her upset tummy through a feeding tube becomes a tender act of devotion while watching other toddlers chatter stings like a fresh wound. Didion’s “magical thinking”—the irrational hope that somehow things might reverse—finds its parallel in my quiet fantasies: Maybe this next test will explain it all. Maybe she’ll wake up tomorrow and talk. Maybe the epilepsy will be gone.

There’s an absurdity to it.

Albert Camus wrote of this absurdity, describing it as a wrenching disconnect between our longing for meaning and the universe’s unreasonable indifference. For a parent of a medically complex child, the need for meaning is unbearable and the silence of the universe is deafening. Why her? Why this relentless uncertainty? The questions pile up like medical bills, unanswered and unanswerable. Camus didn’t offer solutions—he rejected both despair and false hope, urging us instead to rebel and to live in the tension, to embrace the absurd without surrender, refusing to let it dictate despair.

I find myself nodding to Camus in the dark hours, when the house is quiet save for the cough and wheeze of her oxygen concentrator. There’s no grand narrative to stitch this suffering into, no cosmic reason to justify her fragile body or the years we’ve spent chasing a relief that has yet to yield to us. Yet here we are, loving anyway. It’s absurd, this insistence on breaking my soul over a life that might slip away—or might not—on terms I can’t control. And yet, isn’t that the human condition distilled? Believing that love without reward can still bring meaning and to fiercely live that love in the face of the pain? Grief is a partner with love, two sides of the same damn coin.

This absurd love demands its own language, one I’m still learning to speak. Crafting a narrative around my grief can be therapeutic but it also poses a challenge: How do you shape something so raw, so unshaped, into words that don’t cheapen it? Sentimentality is the enemy here—it’s too easy to lean on platitudes like “she’s my hero” or “everything happens for a reason.” Those phrases, completely independent from their veracity or intentions, ring hollow against the reality of a 3 a.m. emergency or the exhaustion of explaining her condition to yet another medical professional. Instead, I turn to the concrete: the weight of her head against my shoulder, the cold metal of a stethoscope, the way her fingers curl around mine during a blood draw. These details anchor the story, letting the grief breathe without forcing it into a tidy arc.

Grief, I’ve learned, is not an enemy to vanquish but a comrade to know. It doesn’t end. It doesn’t leave. It stays, hand on my shoulder. It’s in the way my arms know her weight. In the way I hold my breath every time she twitches. Grief walks beside me, heavy some days, lighter others, a testament to how deeply I love her. It’s there in the laughter we share over a silly game, in the tears I blink back when a well-meaning relative asks if she’s “getting better.” Grief is not a phase to “get over” but a thread woven into our bond, as real as her heartbeat. There’s no epiphany here, no swelling soundtrack—just the quiet ache of doing what must be done. 

So I live with this constant companion, not as a guest to avoid but as a quiet witness to what matters, shadowing me and collecting the admission fee to a life full of loving a child whose genes defy the script, whose very existence challenges the world’s answers. And in this quiet defiance, there’s a strange grace. If you’ve known a grief like this—one that doesn’t fit the mold, one that lingers without fanfare—tell me how you welcome it. Together, we might name our unnameable companion. Camus might call this rebellion. Didion might call it survival. 

I call it parenting.

- Stephen Hager


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Simple Citation List of Works Referenced:

  • Boss, Pauline. Ambiguous Loss: Learning to Live with Unresolved Grief.

  • Didion, Joan. The Year of Magical Thinking.

  • Camus, Albert. (Works referencing his philosophy of the absurd).



Academic/Peer-Reviewed Articles:

  • Title: "Ambiguous Loss Theory: Application to Family Stress and Intervention"

  • Source: Family Relations, 2016 (Pauline Boss)

  • Topic: Grief and Ambiguous Loss

  • Level: Intermediate

  • Annotation: This article provides a deeper dive into Pauline Boss's theory of ambiguous loss. It explores how this type of grief impacts families and offers strategies for coping. Useful for understanding the theoretical framework behind the essay's discussion of unresolved grief.

  • Title: "The experience of parenting a child with medical complexity: a meta-synthesis of qualitative studies"

  • Source: BMC Pediatrics, 2020 (Open Access)

  • Topic: Parenting Medically Complex Children

  • Level: Intermediate

  • Annotation: This study synthesizes qualitative research on the experiences of parents caring for children with medical complexity. It highlights the emotional and practical challenges faced by these parents, including grief, stress, and social isolation. Very helpful for those wishing to understand the commonalities of this experience.

  • Title: "Disenfranchised Grief: Recognizing Hidden Sorrow"

  • Source: Omega—Journal of Death and Dying, 2009 (Kenneth J. Doka)

  • Topic: Disenfranchised Grief

  • Level: Intermediate

  • Annotation: Doka's work is foundational in understanding disenfranchised grief. This article explores how society's norms can invalidate certain forms of grief, such as the grief experienced by parents of medically complex children. It provides insight into the essay's discussion of "unseen" mourning.

Books:

  • Title: Special Needs Parenting: From Coping to Thriving

  • Author: Laura Marshak

  • Topic: Parenting Medically Complex Children

  • Level: Beginner

  • Annotation: A practical guide for parents of children with special needs, offering strategies for coping with stress, building resilience, and advocating for their child. It addresses the emotional toll of parenting a child with medical complexities.

  • Title: It's Okay That You're Not Okay: Meeting Grief and Loss in a Culture That Doesn't Understand

  • Author: Megan Devine

  • Topic: Grief and Loss

  • Level: Beginner

  • Annotation: This book challenges conventional ideas about grief and offers a compassionate approach to navigating loss. It validates the complex emotions experienced by those grieving, particularly in situations of ambiguous loss.

  • Title: The Myth of Sisyphus and Other Essays

  • Author: Albert Camus

  • Topic: Philosophical Grief

  • Level: Intermediate

  • Annotation: Camus's exploration of the absurd is central to the essay's philosophical reflection. This book delves into his philosophy and its relevance to finding meaning in a seemingly meaningless world. Useful for those seeking to understand the philosophical underpinnings of the essay.

Websites/Organizations:

  • The Arc:

  • Website: thearc.org

  • Topic: Support for Parents of Medically Complex Children

  • Level: Beginner

  • Annotation: The Arc provides resources and support for individuals with intellectual and developmental disabilities and their families. Their website offers information on advocacy, support groups, and coping strategies.

  • The Compassionate Friends:

  • Website: compassionatefriends.org

  • Topic: Grief Support

  • Level: Beginner

  • Annotation: This organization offers support for families who have experienced the death of a child. While focused on death, their resources on grief and loss are applicable to the ambiguous grief experienced by parents of medically complex children.

  • Complex Child:

  • Website: complexchild.org

  • Topic: Support for Parents of Medically Complex Children

  • Level: Beginner

  • Annotation: An online magazine and resource for parents of children with complex medical needs. Provides articles, personal stories, and support forums.



Effie ParksComment