Darlene Durand, Parent, Canada –
As the full time caregiver to a child with significant medical needs, I bring a deeply personal understanding of the emotional and practical realities of long term caregiving. My work as a family research partner bridges lived experience with research and practice. I write and speak from a place of honesty, relational insight, and grounded expertise.
Shant Attarmigir, Parent, British Columbia, Canada –
Shant is a father of three whose experiences raising a son with Down syndrome have profoundly shaped his understanding of love and the power of community. He works in occupational health and safety and occasionally writes about the challenges and unexpected gifts that accompany one of life’s most difficult journeys.
Featured Article
Raap, E., Weille, K. L., & Dedding, C. (2025). “I am the mother of the kind of child you dread having”: Experiences of living with chronic sorrow among parents with a disabled child. Journal of Health Psychology, 30(9), 2158–2171.
Darlene’s Commentary
Reading “I am the mother of the kind of child you dread having” felt like someone had finally articulated the emotional terrain I walk every day as the full‑time caregiver to my medically complex child. The article’s framing of chronic sorrow resonated in a way that the language of grief never has. Grief suggests a single moment of loss, something finite, something that eventually resolves. But my experience is not a moment. It is a lifelong, evolving relationship shaped by love, responsibility, and the constant work of navigating a world that was not built with my child in mind.
What struck me most in the article was the recognition that chronic sorrow is not about mourning the child. It is not about wishing for a different version of them. Instead, it is the ongoing ache that comes from loving a child whose daily life requires medical vigilance, coordination, advocacy, and emotional attunement. It is the weight of knowing that their challenges are not temporary, and that the systems around them often fail to understand the complexity of their needs.
I feel this sorrow in waves. Sometimes it arrives quietly, like when I watch other teens doing teen things freely while mine can barely get through a routine without getting fatigued from simply breathing. Other times it hits sharply—like during hospital admissions when I sleep upright in a chair, listening to the rhythm of her machines, knowing that I am the only constant in a sea of rotating staff. There are moments during medical appointments when professionals speak around her needs instead of to them, and I feel the familiar tightening in my chest as I step in, once again, to translate her body to the world.
There are also the everyday moments that outsiders rarely see. The way I monitor her energy levels throughout the day, adjusting plans on the fly when her body begins to tire. The way I prepare for outings with the precision of a small medical unit—equipment, supplies, backup supplies, and contingency plans. The way I carry the invisible mental load of anticipating her needs before she can express them. These are acts of love, but they are also acts of endurance.
What I appreciated most in the article is the authors’ insistence that chronic sorrow is not pathology. It is a natural, human response to a life that demands both tenderness and resilience. It coexists with joy, pride, connection, and meaning. I can feel sorrow when I watch her struggle and still feel overwhelming love when she smiles at me. I can feel the weight of responsibility and still feel honoured to be the person who knows her best.
One of the most meaningful insights from the article is the idea that chronic sorrow deserves acknowledgment, not correction. For caregivers like me, validation from others—especially from healthcare professionals—can be profoundly grounding. When clinicians recognize the emotional labour behind the medical tasks, when they speak to the caregiver as a partner rather than an accessory, when they name the ongoing nature of the journey instead of framing it as something to “get over,” it creates space for honesty. Simple gestures—asking how I am coping, acknowledging the weight of long-term caregiving, recognizing the cumulative fatigue—can soften the isolation that chronic sorrow often brings. A healthcare system that sees the caregiver’s emotional landscape as part of the care plan, rather than an afterthought, would transform the experience of families like mine.
This article gave language to something I have lived for years. It dignifies the emotional reality of caregiving—the beauty, the burden, the responsibility, and the resilience. It reminds me that my emotional landscape is not a failure to cope, but a reflection of how deeply I love my child and how fully I show up for her every single day.
Shant’s Commentary
When I listened to the journal club discussion on grief among parents of children with disabilities, I found myself reflecting on how my own experience differs from many of the stories and themes that were presented. My son, Ronan, has Down syndrome, but we have been fortunate that he does not face many of the significant medical complications that can accompany the condition. Because of this, my experience of grief does not stem from concerns about his health or from a sense of loss regarding who he is.
Instead, my grief comes from the limitations I encounter in my ability to fully connect with and support him.
One of the clearest examples is communication. Ronan’s speech is significantly delayed, yet it is obvious that he knows exactly what he wants to say. He speaks with conviction, intention, and emotion. When I fail to understand him, he becomes frustrated, and I can see that he recognizes the communication breakdown just as much as I do. In those moments, I often feel a profound sense of sadness. It is not because he lacks something, but because there is a barrier between us. I often think of it like a zipper whose teeth will not align properly. Both sides are there, and both are trying to connect, but sometimes they simply do not engage despite repeated attempts.
Another source of grief comes from the world around him. Many activities available to typically developing children are not designed with children with disabilities in mind. Specially trained coaches, adaptive equipment, and inclusive programming are often exceptions rather than the norm. Opportunities that do exist can be expensive, difficult to access, or scheduled in ways that are challenging for families balancing the needs of multiple children. Support personnel are sometimes limited due to demand or geographical constraints.
At the other end of the spectrum, the limited inclusive programs that do exist may not provide enough challenge to foster continued skill development. Too often, they also fail to offer a pathway back into mainstream activities when a child acquires the skills needed to participate successfully. At the same time, these programs may be offered so infrequently that children miss out on the lasting friendships, shared experiences, and sense of belonging that their siblings develop through regular participation. In the end, neither approach adequately meets his needs.
What I find myself grieving is not my son, but the systemic limitations that continue to impede full inclusion. This is particularly surprising given the considerable progress that has been made over the past several decades in identifying, understanding, and supporting individuals with disabilities. I see his personality, his enthusiasm, his kindness, and his desire to participate. I also see, often painfully, the obstacles that prevent him from expressing those qualities as freely as he should be able to.
My journey of grief is not one of mourning the child I have, but of confronting the barriers that still stand between him and the opportunities he deserves.
This commentary was supported by Child-bright
TRENDS 2026; Special Edition 1: Parent Perspectives
Click the links below to view this months full list in desired format.
Cantwell-Bartl, A. (2018). Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model. Death Studies, 42(9), 569–578.
Glenn, A. D. (2015). Using Online Health Communication to Manage Chronic Sorrow: Mothers of Children with Rare Diseases Speak. Journal of Pediatric Nursing, 30(1), 17–24.
Hoffmann, T. M., Friedrich, B., & Lewis, C. (2025). “I don’t grieve as much as I used to”: A qualitative study on parents of children with rare and undiagnosed conditions navigating grief in the context of uncertainty. Journal of Genetic Counseling, 34(6), e70149.
Raap, E., Weille, K. L., & Dedding, C. (2025a). “I am the mother of the kind of child you dread having”: Experiences of living with chronic sorrow among parents with a disabled child. Journal of Health Psychology, 30(9), 2158–2171.
Raap, E., Weille, K. L., & Dedding, C. (2025b). ‘It is up to me because I gave him this life’ How the awareness of being permanently and unconditionally responsible shapes the experience of chronic sorrow in parents of disabled children. Psychology & Health, 40(12), 2055–2075.
Raap, E., Weille, K. L., & Dedding, C. (2025c). Vulnerabilities and Missed Chances: The Dynamics in the Relationship Between Parents of Disabled Children and Professionals in the Context of Chronic Sorrow. Journal of Social Work, 14680173251369716.
Whittingham, K., Wee, D., Sanders, M. R., & Boyd, R. (2013). Sorrow, coping and resiliency: Parents of children with cerebral palsy share their experiences. Disability and Rehabilitation, 35(17), 1447–1452.