When You Love Your Child With Everything You Have, and Still Grieve the Life You Planned

Bailey Murphy
11 minutes ago
4 min read

I remember it so vividly, the moment my world changed forever: a hospital room in Vancouver. A doctor I had never met before speaking to me with words I didn't understand. My husband sitting next to me, holding my hand like he could tether me to the earth if he held on tight enough.

"Your Daughter Has Epilepsy."

Those four words, presented with such clinical 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.

My thoughts in those first few moments were jumbled and frantic. There couldn't be anything wrong with my baby, I had done it all, while I was pregnant, followed every rule. She was only two months old, barely even out of the newborn stage. 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 I never expected and never planned for.

I was in shock. I was angry. I was devastated. Somewhere underneath all of that, I was already beginning to grieve.

What Nobody Tells You About Motherhood

What we don't talk about enough is what happens when motherhood suddenly looks nothing like you imagined it would. I was navigating the impossible terrain of postpartum life: the sleep deprivation, the identity shift, the quiet pressure to have it all together. Now I had a medically fragile infant, a diagnosis I didn't fully understand, and a future that felt like it had been completely rewritten without my permission.

No one told me that becoming a mother to a child with complex needs means carrying two things at once, always: the profound love you have for the child in front of you, and the grief for the life you had quietly been planning for them.

The Invisible Labour of Loving a Child Who Needs More

The mental load of motherhood is already enormous. Add a child with a diagnosis into that picture, and the load doesn't just increase, it multiplies. It becomes researching every available treatment option at 2 a.m., because the doctors are helpful, but you are the one who has to live this. It becomes attending specialist appointments and absorbing complex medical information, then going home and making dinner. It becomes explaining your child's needs to every teacher, every caregiver, every well-meaning relative, over and over again, while managing their reactions and yours.

The Specific Grief of Mothers

There is something particular about the way mothers carry this kind of unique grief. We're conditioned, before we even become mothers, to fold ourselves around our children's needs, to prioritize, to manage, to keep things running. And when the life you had imagined for your child begins to look different, there is often no one asking how you're doing, because you are clearly handling it, you have no other choice.

What I have come to understand, both in my own life and through my work with clients, is that this grief is not weakness. It's not a sign that you are struggling to accept your child or that you love them any less. Grieving the life you planned for your child is one of the most honest expressions of love there is. It means you feel their potential hardships as your own. It means you are paying attention.

What You Actually Need (That Nobody Is Asking About)

I remember the first time I met a therapist after my daughter's diagnosis. What I was bracing for was the version of kindness that had been offered to me at every previous step: "You're so lucky, it could be so much worse." "You are so strong for going through this." Always well intentioned, and always, somehow, leaving me more alone than I was before.

"That sounds so hard. I cannot imagine the grief you must be feeling. This isn't the life you expected 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.

In the years since my daughter's diagnosis, I have sat with many mothers in a very similar place. And the thing they tell me, again and again, is that they have never been asked the right question. They have been asked how their child is doing. What they have not been asked, clearly and directly, is how they are.

So, I am asking you. How are you? Not as a caregiver or an advocate or a coordinator: how are you, as a person, inside all of this? Your wellbeing matters. Because you are a person. Because the weight you carry is real, and you deserve support that sees that weight clearly and does not flinch.

Therapy is not a luxury for parents in crisis. It's a space where you are finally allowed to be something other than the invisible force holding it all together.