The Burden of Care: Love Inside Heavy Things

The Weight Unseen

There are many phrases we use half-heartedly. Phrases we don’t fully understand, yet use to describe feelings or situations we ourselves have never truly experienced. It’s not until we witness someone living out that phrase that we begin to understand what it really means.

To me, that phrase is the burden of care.

Recently, I took a survey called the burden of care survey. Its purpose was to understand what a caregiver sacrifices or endures while caring for someone dependent on them. Sometimes caregiving is unexpected. Sometimes it comes through obligation, circumstance, or love. Either way, someone is handed a responsibility that can feel impossibly heavy.

The survey asked questions like:
How has caregiving impacted your life?
Does it affect your marriage?
Your work life?
Do you sleep well at night?
Do you struggle with anxiety or depression because of your circumstances?

On the outside looking in, the burden of care can seem ordinary at first. A missed event here. A handicap parking spot there. A mother answering texts three hours late from a hospital room. Someone who always looks slightly tired, slightly distracted, as if part of them is somewhere else entirely.

When you ask them how they are, the answer feels heavier than the question itself.

It’s easy to say things like, “I don’t know how you do it,” or “You have your hands full.” But the truth is, most people don’t fully understand what it means to carry someone else’s life alongside your own.

I took this survey in front of a few people. Some I trusted, some who had only met me that day. It asked questions I had never really stopped to answer honestly before, and responding from my gut brought emotions to the surface that I wasn’t prepared for.

I am a young mom. I’m 28 years old. I’m not caring for an elderly parent or helping a sibling through a difficult season of life.

I am the caregiver of my disabled daughter.

I am her nurse, her secretary, her physical therapist, her speech therapist. I clean vomit off her paralyzed body when she cannot breathe, and I carry her when her body simply stops working. I answer the door when hospice arrives and they ask, “Your relationship to the patient?”

And I answer, “Mom.”

So what is the burden of care?

I can only explain it through what I’ve learned living it.

And before I continue, I want to make something clear: this is not written for sympathy or attention. None of my writing has that intention. My hope is simply to create awareness so that maybe we can care for one another better. Maybe we can understand one another more gently.

And maybe, too, we can recognize that even in suffering, God is present.

A Constant Stress

It’s difficult to explain because it doesn’t always look the way people imagine.

It’s not always panic or visible chaos — although there have certainly been days like that. It’s more like a tightly pulled string. Hanging from that string are responsibilities, schedules, medications, appointments, fears, finances, emergency plans, and exhaustion. And no matter how hard you try, the string never fully relaxes.

Then suddenly, something pulls on it.

A fever.
An insurance denial.
A seizure.
A hospitalization.
A bad oxygen saturation number.

And for a moment, it feels like everything hanging on that string may come crashing down at once — including you.

The string is the constant awareness of our daughter’s frightening, life-threatening, ever-changing diagnosis. One day she may seem stable, and the next she may not. It’s the stress of knowing that if she gets sick, our entire world changes. Plans disappear. Isolation begins again. Hospital stays become possible.

It’s the fear of dropping her while carrying her.
The fear of her falling asleep and not waking up.
The long-term grief of wondering who will care for her when she is older, if we are blessed enough to get there.

And all of those thoughts exist alongside ordinary life.

Laundry.
Work.
Bills.
Marriage.
Cleaning.
Cooking.
Trying to sleep.

The burden of care becomes the underlying current beneath everything else.

It affects every decision we make.

Why do I work the way I do? So I can stay close to Paige and help provide therapies, equipment, and support during severe episodes.

Why do we structure our schedules so carefully? So if something emergent happens, we can drop everything and be by her side.

Why do we sometimes limit ourselves socially? Because protecting her health often requires sacrifice long before anyone else notices the risk.

Our lives have become carefully structured around survival, stability, and protecting her well-being. There is beauty in that kind of devotion, but there is also exhaustion.

I suppose the only phrase people have found to hold both of those truths at once is: the burden of care.

Love Underneath the Weight

Perhaps the hardest part of the burden of care is that eventually, it stops feeling separate from you. It becomes part of how you think, how you move, how you love.

You don’t “clock out” from it.

Even during laughter, during church, during date nights, during sleep — some part of your mind is still listening for alarms that haven’t sounded yet.

And yet, somehow, by the grace of God, love grows as the burden grows.

Sacrifice becomes part of who you are. And maybe that is part of what God is teaching us through it all. Christ sacrificed for us, and because of that, I can sacrifice for my daughter, for my husband, and for the life we’ve been entrusted with.

Not the easy kind of love.
Not the carefree kind.

A sharper kind.
A steadier kind.

The burden of care has made me more exhausted than I knew a human being could be — but also more aware of what truly matters. It has stripped away my obsession with appearances, busyness, and things that once felt urgent but really weren’t.

It has taught me tenderness.
Urgency.
Dependence on God.
And how sacred ordinary moments really are.

I think people hear the word “burden” and assume resentment. But that isn’t what I feel when I hold my daughter.

Heavy?
Yes.

Terrifying?
Sometimes.

Lonely?
Absolutely.

But love can still exist inside heavy things.

Maybe that’s what people on the outside cannot fully see. The burden is real — but so is the privilege of loving someone this deeply.

And through every burden we carry, God gives grace sufficient enough to carry it too.