The Grief No One Talks About: Loving Your Child While Mourning the Life You Planned

Bailey Murphy
4 days ago
7 min read

Author: Bailey Murphy, Registered Clinical Counsellor

"Your daughter has epilepsy."

I can remember so vividly the moment my world changed, in a hospital room in Vancouver with a doctor who I had never met before and my husband sitting next to me holding my hand. Those four words, presented with such fact, shattered my entire reality in a matter of seconds. I felt like I was underwater, and the words were being filtered in through a wall of static. Nothing about the doctor's words made sense: there couldn't be anything wrong with my baby. I did everything right while I was pregnant. She was only two months old; I hadn't even really had a chance to get to know this new little person and now she was being given a diagnosis and a label that I never expected or planned for. I was in shock, I was angry, I was devastated, and I felt like there was no light at the end of the tunnel.

I look back on that day in the present almost five years later and I can so clearly recognize my own grief. It feels obvious now, but in the moment, it just felt like drowning. The shock and the fear and the terror of the future and the endless unknowns had an iron grip on me. I was a new mom trying to navigate the already impossible struggle of postpartum life, and I now had to grapple with a medical diagnosis and a label for my child that I didn't even fully understand. My grief was raw, and it bled into every aspect of my world in the following weeks and months and years. How do you just go on living your life after receiving this kind of catastrophically devastating information? For me, it felt impossible.

What Is Parental Grief After a Diagnosis?

When a child receives an unexpected diagnosis, parents often experience a grief that catches them off guard. You're mourning the future you had imagined—the easier path you hoped your child would walk. Yet your child is still here, still the person you love fiercely. This collision of love and loss creates a unique kind of pain that many parents struggle to name.

This is parental grief, and it's as real and legitimate as any other form of mourning. It doesn't mean you love your child any less. It means you're human, processing a profound shift in how you imagined life would unfold.

I've lived this grief for years. Some days it becomes so small I barely notice it's there. Other days, a wave crashes over me and I'm right back in that hospital room, drowning in fear and uncertainty. The grief doesn't follow a neat timeline—it ebbs and flows in ways that can feel unpredictable and exhausting.

What I've learned, both personally and through our work at Eterna, is that you don't have to choose between grieving and loving. You can hold both. With the right support, parents learn to make room for the complicated emotions that come with their child's diagnosis—the sadness, the fear, the love, the hope—all of it.

When Your Child's Diagnosis Changes Everything

When we talk about grief, most people assume we're talking about death and the kind of loss associated with it. But grief can blend and reshape itself: it is a chameleon that reaches us in different ways that we might not have ever expected. No one talks about the grief you feel as a parent when your child receives a diagnosis that you didn't ever plan for. There is a very real mourning period that you can experience in these moments, where you grieve the loss of the life you expected for yourself and for your child, a life that would have been easier and more straightforward.

As parents, we want the best for our children. We don't want them to suffer unnecessary hardship or face adversity if we can prevent it. But when your child is given a diagnosis that you know will inevitably impact the rest of their life (and yours), sometimes it feels like the world is an unfair place and that all that lies in store for yourself and your family is a lifetime of pain and suffering. And as a parent, how can you possibly live every day of your life with that kind of reality in mind?

Tip: Grieving the life you planned for your child doesn't mean you love them less. It means you love them so much that you feel their potential struggles as your own. These feelings can coexist—deep love and painful grief can live side by side.

The Permission to Feel What You Feel

I remember the first time I met a therapist after my daughter was diagnosed with epilepsy. I had told the story of her diagnosis and condition so many times that by our first session together, I was an expert. I could hit all the necessary bullet points and explain the possible prognosis and how it would impact my child moving forward, all of the therapies she might need and the ways she might be different from her peers. When I finished telling her the details, I expected to hear the platitudes that I'd received from well-intentioned loved ones and medical professionals at every step of my journey so far.

"You're so lucky, it could be so much worse."

"You are so strong going through this."

"We're never given more than we can handle."

The words were always well intentioned, always coming from a place of love and support. But when you're already drowning, those words can feel dismissive. They can feel misplaced. They can feel like ignorance. I will never, ever forget what my therapist said to me next and how it shaped the rest of my life moving forward.

"That sounds so, so hard. I cannot imagine the grief you must be feeling. This isn't the life you expected or wanted for your child, so of course you wish you could take that kind of suffering from her. That doesn't mean you love her less or want her less: it means you love her so much that the fear for her future is so big that it hurts you too."

It was like being given permission to breathe. I had spent so long trying to find a positive spin or to make some kind of deeper meaning exist within my child's diagnosis that I hadn't realized that the way that I felt was okay. And it wasn't just okay, it was expected. It was normal. To this day, I use what I learned in that session with my therapist with my own clients who are struggling with the reality of something deeply challenging.

Finding the positive in situations

Hard things happen. It isn't always fair, and it's okay to grieve. When you're ready to see it, there is a light at the end of the tunnel, even if it feels like the light is far away, even if you feel like you're still underwater living in the static while you try to accept and navigate the life you're being faced with.

I don't pretend to have all the answers, but what I do know is that in therapy, there is space for all your feelings, even the messy ones. Especially the messy ones. Resentment, anger, fear, guilt, love, joy, and hope: they all matter. Love and loss and grief can all coexist, and it's our job to sit with you while we untangle the feelings so you can finally begin to breathe again.

You Don't Have to Navigate This Alone

If you recognize yourself in this experience, please know that what you're feeling is valid and you don't have to carry it alone. Hard things happen. It isn't always fair, and it's okay to grieve.

Change doesn't happen overnight, and healing isn't linear. Some approaches work better for different people, and it's okay to find what works for your unique experience. The most important step is recognizing that you deserve support and that there is space for all your feelings—the messy ones, the complicated ones, and yes, even the grief.

Bailey Murphy, MACP, RCC, CCC is a therapist at Eterna Counselling & Wellness in Abbotsford, BC, specializing in trauma-informed care for families, parents, and youth. She works with parents of children with disabilities or chronic illness, neurodivergent youth navigating identity and belonging, and families breaking intergenerational trauma patterns.

As a mother of two daughters—including one with epilepsy—Bailey brings lived experience to her understanding of parental grief, caregiver burnout, and the invisible weight of advocating within systems that weren't built with complex families in mind. Her approach centres on creating shame-free spaces where clients can hold both love and loss while building the skills to move forward.

Common Questions About Parental Grief

Is it normal to feel grief when my child is still alive?

Yes, parental grief after a diagnosis is completely normal and valid. You're grieving the loss of expectation & the easier path you had envisioned. This doesn't mean you don't love your child—it means you're processing a profound life change. Many parents experience this complex grief, and with therapeutic support, they learn to hold both their love for their child and their grief for what might have been.

How long does this kind of grief last?

Grief doesn't follow a linear timeline and may resurface at different life stages or milestones. Some days the grief will be barely noticeable; other days it may feel overwhelming. This is normal. With time and support, many parents find that while the grief doesn't disappear entirely, it becomes more manageable and less consuming. Therapy can help you develop strategies to navigate these waves of emotion.

Can counselling really help with this kind of grief?

Yes, counselling provides a safe space to process these complex emotions without judgment. A therapist who understands parental grief can help you: acknowledge your feelings without shame, develop coping strategies for difficult moments, maintain connection with your child while processing your grief, and find meaning and hope alongside the pain.

Should I seek support even if my family doesn't understand?

Absolutely. Not everyone will understand this unique form of grief, and that's okay. What matters is that you get the support you need. A therapist specializing in parental grief or family challenges can provide the understanding and validation you're seeking. Our Fraser Valley therapists work with parents navigating these experiences regularly and can offer both individual and family counselling when appropriate.