There are moments in parenting a child with medical complexity that I don’t think the human body was designed to experience repeatedly.

This week was another one.

Gabi’s oxygen saturation dropped into the 30s and stayed dangerously low while we tried to stabilize her. Around us, the medical team prepared for possibilities no parent ever wants spoken aloud. Intubation was on the table. So was the possibility that we might not be able to bring her back.

Again.

I no longer know how many times I have stood inside some version of this moment.

Dangerous desaturations. Ambulances. PICU admissions. Watching a room suddenly fill with people. Watching clinicians’ faces change before anyone says a word.

Moments when I have genuinely wondered whether my daughter was going to survive.

It is more than a parent should experience in a lifetime.

And yet when you raise a child with medical complexity, extraordinary events can become woven into ordinary life in ways that are difficult to explain to people outside of it.

I am very good in a crisis

Maybe too good.

When Gabi is in trouble, something inside me becomes incredibly clear.

I assess. I problem-solve. I track her breathing, colour, heart rate and oxygen saturation. I think about positioning, airway clearance, oxygen, BiPAP, suctioning, secretions—what we have tried and what we need to try next.

But mostly, I watch her.

Because underneath all the numbers and equipment is my daughter, experiencing something frightening inside her own body.

So while everything around us escalates, I get quieter.

I stay close. I regulate myself. I tell her I am there. I tell her she is safe.

I hold calm around her while her body fights.

I have done this enough times that I am exceptionally good at it. And because I can remain calm, think clearly and function during circumstances that are almost impossible to describe, it can appear as though I am handling it extraordinarily well.

I am.

And I am not.

Both things are true.

Fear cannot be the loudest thing in the room when my daughter is struggling to breathe.

So my body does something automatic now.

It becomes useful before it becomes human.

There is a particular loneliness in becoming the calmest person in the room during moments terrifying enough to alter you.

People experience your steadiness as strength. Sometimes they even draw comfort from it. And perhaps it is strength.

But sometimes I wonder whether what people call strength is simply the absence of permission to be anything else.

The body learns which emotions are useful in an emergency and which ones interfere with survival.

Fear slows you down. Grief distracts you. Panic fractures attention.

So the body becomes efficient. Focused. Quiet.

Not because the fear disappears.

Because there is no safe place for it to go.

The body keeps a different record

There is actually a name for some of this: pediatric medical traumatic stress. It describes the psychological and physiological responses children and families can experience in relation to serious illness, medical procedures and frightening medical events.

But for families of medically complex children, the trauma is often not one event.

It happens again and again.

Research describes repeated medical trauma and re-traumatization—an initial traumatic experience followed by ongoing exposure to illness, hospitalization, medical crises and reminders of what has happened before.

That distinction matters to me.

Being regulated during a crisis does not mean the crisis is not affecting me. Sometimes regulation is simply what allows me to survive it.

There is no room for me to fall apart when Gabi needs me.

The barriers go up. My focus narrows. I become calm, clear and extraordinarily functional.

Those protective mechanisms have served me well. They allow me to advocate, make decisions, problem-solve and remain emotionally available to Gabi when she needs me most.

But the body keeps a different record than the mind does.

And the body does not measure safety by performance.

The crisis eventually ends.

My nervous system does not necessarily end with it.

There isn’t always an after

We often talk about trauma as though there is an event and then there is the aftermath.

Before. During. After.

But what happens when there is no clean after?

What happens when you recover from one crisis knowing another may eventually come?

When the hospital becomes familiar. When you know and manage the equipment. When you can recognize concern by the movement of staff around the room. When your child’s oxygen saturation falling into dangerous territory is both terrifying and familiar enough that you already know what happens next.

This is one of the hardest things to explain about raising a child with medical complexity.

You are not simply recovering from the frightening thing.

Sometimes you are trying to recover while continuing to live inside the conditions that created the trauma in the first place.

There are beautiful stretches of stability. There is laughter and stories and movies and ordinary family life. There is deep, profound love. There is enormous joy.

And alongside that joy lives the knowledge of what you have already seen.

And what could happen again.

Competence can hide suffering

I have written before about the paradox of competence in hospital care—how becoming highly capable of caring for a medically complex child can sometimes lead others to step back because they know you can handle so much yourself.

But I am beginning to realize there is another paradox too.

The better you become at surviving crisis, the easier it becomes for the cost of that survival to disappear from view.

People see capability. Composure. Knowledge. Advocacy.

They see a mother who can stand beside her child whose oxygen saturation is catastrophically low and still think clearly.

What they may not see is what it costs to become that person.

And perhaps sometimes we do not see it ourselves.

Competence is a beautiful survival strategy.

But competence can also become armour.

And armour is useful when you are walking into battle.

It is just very heavy to live inside indefinitely.

I sometimes wonder whether people experience me as calm when what they are actually witnessing is containment.

When regulation becomes another kind of competence

There is another contradiction in all of this that I am only beginning to recognize.

I coach parents about regulation. About balance. About finding steadiness inside uncertainty.

And I believe deeply in what I teach.

In many ways, I am exceptionally good at it.

But perhaps where I am less skilled is afterward.

When nobody needs me to hold the room together anymore. When the numbers recover. When the emergency equipment is put away. When everyone else exhales and moves on.

I am very good at surviving the crisis.

I am not sure I have always been as good at allowing myself to experience what surviving it has cost me.

Instead, I move.

I work. I write. I research. I study. I teach. I build things.

I turn experience into meaning almost automatically.

Academia has become part of that. So has my work with families. Taking what I have lived and shaping it into research, teaching, writing and support for other families gives form to experiences that otherwise feel impossible to hold.

And I do not think that is inherently avoidance.

I think meaning-making is one of the ways human beings survive unbearable things.

But I am beginning to wonder whether purpose can also become another kind of armour.

Because there is always another paper to write. Another framework to build. Another family to help. Another question to answer.

There is always somewhere productive for the pain to go.

Except, perhaps, into me.

I became so practiced at regulating fear for everyone else that I sometimes forgot fear was still moving through me too.

There is a difference between staying calm and ever truly coming down from survival mode.

And maybe there is also a difference between making meaning from what happened and allowing myself to fully feel what happened.

I am beginning to think I need both.

I don’t want to lose the softness

I do not want everything we have lived through to make me hard.

I understand why the barriers inside me exist. They were not weaknesses. They were intelligent adaptations to circumstances I once could not have imagined surviving.

But I also want to know when I am safe enough to put them down.

Because underneath all of this, there is a quieter question I am only now beginning to ask:

Who am I when nobody needs me to hold everything together?

I do not think healing from this kind of life means pretending the danger was not real.

It was real.

This week, it was real again.

But perhaps healing means learning that strength does not always have to look like endurance.

Perhaps it means recognizing that the mother who stays peaceful beside her child during the crisis also deserves somewhere safe to fall apart afterward.

Perhaps it means understanding that being exceptionally good at carrying something does not mean it is not unbearably heavy.

And perhaps it means listening sooner when the body begins whispering what the mind has become very skilled at overriding.

Because the body whispers for a very long time.

Until eventually it does not.

Eventually it says:

No more.

And maybe that is not weakness.

Maybe it is the body finally asking to be cared for too.