Living With Grief That Doesn’t End: Love, Caregiving, and Finding Meaning After TBI

Jonny and Me

Grief is often spoken of as something that ends — a process you move through after loss. But some grief does not end. It lives alongside love, reshaping each day.

As a parent and caregiver to my son after his traumatic brain injury, I have learned what it means to carry both sorrow and gratitude, loss and love, at the same time. This is the reality of living with grief that continues and of discovering that meaning, beauty, and courage can still exist within it.

Grief That Doesn’t End

When most people think about grief, they imagine it as something tied to death, a process with stages, or a loss you eventually “heal” from. But for many families, grief looks very different.

Mine is tied to my son’s traumatic brain injury and to my life as his caregiver. It is not a single event in the past, but something I live with every day.

It is a grief that does not end.

Love, Loss, and Caregiving

Me and Jonny in the hospital

I grieve for who my son used to be while loving who he is now. I grieve the dreams we both lost while still showing up for the life we have.

I feel it when he struggles. When I watch others reach milestones he cannot. When ordinary moments remind me how different our life is from what it once was, and from the future we had imagined.

This is what is often called ambiguous loss, when someone you love is still here, but changed in ways that break your heart.

Caregiving deepens this grief. I am both grateful and devastated, both strong and exhausted. I love fiercely, but I also ache fiercely. Caregiving gives me purpose, but it has also required losses of its own including parts of myself that I am still learning to understand.

The Weight of Anticipatory Grief

There is another layer, the grief tied to what has not yet happened.

I live with an awareness of what may come next: additional medical complications, increasing dependency, a future where I may no longer be physically able to care for my son in the same way, or outcomes I cannot yet see.

I grieve ahead of time and then sometimes grieve again when reality arrives.

This kind of grief demands ongoing courage. It asks me to adapt quickly, to turn when life turns, and to keep showing up even when the path shifts without warning.

While each story is different, I know I am not alone. Many caregivers and parents live within this same turning.

When Caregiver Grief Feels Invisible

Another challenge of this grief is how unseen it often feels.

There are few words for it. No rituals that honor it. No clear language for what it means to live with grief that continues while the person you love is still alive.

And yet, every day, caregivers sit with this reality. We face what is, even when what is feels unbearable. That willingness to remain present, to keep loving even when it hurts is its own kind of courage.

What Grief Has Taught Me

Over time, I have come to see that grief is not only sorrow. It has also been a teacher.

It has taught me presence, to stop reaching for what should have been and to pay attention to what is.

It has revealed unexpected beauty: a small triumph, a quiet laugh, a shared glance. These moments shine brighter because of the shadow surrounding them.

It has deepened my understanding that love is larger than circumstance. That meaning can exist even in hardship, and that life can still hold wonder even when reshaped by loss.

It has nurtured gratitude. I am grateful for my son’s life, for the love we share, and for the time we still have even while I miss, with equal intensity, all that was taken from us.

Gratitude does not erase grief. But it can walk beside it.

For anyone carrying their own form of loss whether it looks like mine or not, sorrow and beauty can coexist.

Holding Loss and Love Together

Jonny and Me on a Ferry

My grief is complex, ambiguous, anticipatory, and ongoing.

I love my son with everything I have, and it is because of that love that this grief runs so deep. But alongside the pain, there is also resilience. There is courage. There is gratitude. There is beauty.

This is what it means to grieve while still living. To carry loss and love, sorrow and beauty, gratitude and longing, side by side.

And if you have ever lived through a loss that does not end, you may recognize something of this too.

If this reflection speaks to you, you are welcome to share your experience in the comments or pass it along to someone who may need it. Grief is something many of us carry quietly, and sometimes words help us feel less alone.

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