IT’S 3:36 AM ON a Saturday morning.
My alarm is set for 4:30am.
I’ve had about four hours of sleep, and I already know that’s all I’m getting tonight.
I’m awake.
Not because I want to be.
Because Gloria is.
She lies beside me, restless. Every few minutes she twitches, kicks out, rolls over or sighs. Tonight has been one of those nights. No fever. No illness. No obvious explanation. Just… unsettled. Just being Gloria.
I’m desperate to get out of bed. I can’t stand lying here, I have a thousand things to do.
But I can’t.
Because the moment my feet touch the floor, she’ll follow.
And then chaos will ensue.
Lights will come on.
The television will be blaring within minutes.
Cupboards will be raided.
Doors will bang.
The whole house will abruptly come to life.
So I stay still.
Listening.
Waiting.
Hoping she’ll drift back to sleep.
She won’t.
This isn’t unusual.
This is simply our normal.
I’m angry. I’m sad. I’m deflated.
I’m a father. I’m a carer. There’s a difference between those two roles in my opinion. Some may disagree, and I see why. Every father and every parent is a carer right? It’s the definition of parenthood. But being Gloria’s father feels different…it feels a lot more carer than father, and at times it’s arguably all caring and zero fathering. At 3:36am, these feelings hit ten times harder. At 3:36am, these were my raw thoughts. And this is simply how I came to write these words.
***
Gloria is ten years old. She has an extraordinarily rare genetic condition. So rare that, as far as we know, there isn’t another person in the world with the same genetic deletion. Around forty genes are missing from one of her X chromosomes. Those missing genes have shaped every part of her life.
Her height.
Her cognition.
Her speech.
Her sleep.
Her anatomy.
Her behaviour.
Her immune system.
Her future health.
Almost every system in her body has been affected.
People often ask what syndrome she has.
The honest answer is that she doesn’t really fit into one.
She’s simply Gloria.
Wonderful.
Funny.
Affectionate.
Unique.
Completely herself.
And profoundly affected by a condition that very few people, including most doctors, have ever heard of.
People often ask another question. One that I chuckle about even. “Why are you sleeping in bed with your ten-year-old daughter?” The answer is remarkably simple. Because it’s what works. I’ve slept beside Gloria almost every night for the past three years.
Not because anyone recommended it.
Not because it was part of some behavioural therapy.
Not because we haven’t tried other approaches.
And not because I don’t want to share a bed with my wife!
Because somewhere along the way it became the least disruptive option for our family.
If Gloria is beside me, there’s at least a chance the rest of the house gets some sleep. Our other children might make it through the night. My wife might get a full night’s rest. On the occasional good night, Gloria sleeps until morning. Most nights aren’t good nights. Most nights look like tonight. It’s not ideal. It isn’t what we imagined family life would look like. But when you’re caring for a child with significant additional needs, you slowly stop searching for perfect solutions. You become remarkably good at damage limitation. You become remarkably bad at trying to change anything.
You might also wonder why my alarm is set for 4:30am every Saturday morning. My theory is that the earlier I wake up, the less chance Gloria will wake up with me. That alarm goes off every single week. Every Saturday I make the same gamble.
Maybe today Gloria won’t wake up with it or even before it.
Maybe today I’ll quietly slip out of bed without disturbing her.
Maybe today I’ll get two precious hours to myself before the rest of the house wakes.
From 4:30am until around seven o’clock, I try to reclaim something that resembles normality.
I get out and exercise.
I read.
I listen to music.
If I’m lucky, I get back to a still house and empty the dishwasher.
Sweep the kitchen floor.
Prepare breakfast.
Straighten the cushions that somehow never stay straight.
Put a wash on.
Ordinary things.
Painfully ordinary things.
Yet they have become luxuries.
Those hours are dark.
Cold.
Lonely.
Especially in the middle of a Perth winter.
But they’re mine.
Or at least they usually are.
Today they’re gone.
I can already feel the frustration building.
The small rituals that help me stay physically and mentally healthy have disappeared before the day has even begun. There’s always next Saturday I guess. Could I go for a run later? Probably. But later means leaving my wife to manage the chaos on her own. She already does that all week, I feel so guilty allowing that on the weekends too. Even if it is for just a short time. I know she encourages and sees the absolute necessity of it for my benefit, but I still can’t help feel the guilt. It means disappearing while she juggles two children, one of whom needs constant supervision and at times can feel like a personified prison cell. And guilt has a remarkable way of stealing enjoyment from even the healthiest habits.
Sometimes all we want is thirty uninterrupted minutes.
To exercise.
To sit quietly in a café.
To not be asked for the hundredth time in a day to thread a random wire through a random hole in a random toy.
To not have to listen to the same six-second snippet of the same theme tune, from the same program, at the same blaring volume, on repeat every single day.
This is not because we are asking for luxury.
This is because we’re asking for recovery.
Now this may sound remarkably similar to ‘just being a parent’. I know children change your life. I know because I have three of them. My eldest son is nineteen. Our youngest is three. Children are wonderfully disruptive.
They change your routines.
Your finances.
Your priorities.
Your sleep.
Every parent understands that.
But caring for a child like Gloria is different.
Not better.
Not worse.
Different.
The highs are extraordinary.
So are the lows.
The way I often describe caring for Gloria is this: it’s like caring for a two-year-old… forever.
There is a reason children grow up. It’s part of human development. Just as parents reach the point where a particular stage feels relentless- when they’re exhausted, overwhelmed, and wondering how much longer they can keep doing it- the child moves on. A new phase begins. New challenges replace the old ones, but they are different challenges. Parents adapt. They develop new skills. Often the demands become less physical, or less constant, or simply different.
When a child has profound disabilities and doesn’t follow that developmental path, that progression never comes.
The physical demands don’t disappear. The constant supervision doesn’t ease. The emotional load doesn’t lift. Instead, the same challenges continue year after year, while new ones are added on top. That realisation hits hard, even when doing the most mundane of tasks. That fight every parent has for a year or two convincing their child to brush their teeth before bed…when you are ten-years into that battle with no sign of let-up, it just saps you. Multiply that by all the other tasks children eventually master themselves, and you have caring for Gloria in a nutshell!
We’ve had a two-year-old child… for eight years…and counting.
My wife once said something that has stayed with me ever since.
“We mourn for Gloria every day.”
I recognise that this is a different kind of mourning from losing a loved one, and I would never suggest otherwise. But it is still grief, and in those hardest moments, these are the only words that feel honest. It’s an imperfect way of describing our feelings, admittedly.
Every single day I catch myself grieving the life she will never have, only for a few seconds, but it happens. Then I selfishly mourn the life I will never have as her father. Or maybe it’s the life I will have as her carer…realising I will care for her forever. Realising that Gloria will need me forever, the roles will never be reversed. Then I feel guilty for grieving on her behalf. She deserves to define her own happiness. But comparison is difficult to escape.
Yesterday we walked from the school gates to the car. The walk should have taken a minute. It took almost ten. She stopped six times to pick up sticks.
Snapped them.
Dropped them.
Found another.
Refused to walk until she found the exact stick she wanted.
I asked the questions every parent asks after school.
“Did you have a good day?”
“What did you have for lunch?”
“Who did you play with?”
She didn’t answer. She never does. She never will.
Around us, parents chatted effortlessly with children the same age. Stories about friends, teachers, weekend plans.
A little girl said “goodbye Gloria”. It makes me so proud, she is so popular in school, everyone knows Gloria. Gloria has no idea. I always reply, “say goodbye Gloria”. I always laugh nervously while saying it. She never says goodbye.
Then we drove home carrying a sadness and silence that’s difficult to explain unless you’ve lived it.
This is what I mean by mourning.
Not because Gloria isn’t wonderful.
She is. She is actually the most majestic, fascinating, curious little girl.
She fills our home with laughter in ways only she can.
But I grieve the conversations we’ll never have.
The independence she will never know.
The ordinary milestones that most parents hardly notice because they arrive so naturally.
Comparison is the thief of joy.
I know that.
Yet some days it still steals mine.
As I lie here at 3:36am in the morning, another thought enters my mind. I’m not unique. There are thousands of parents awake across Australia right now.
Some are comforting children with severe autism who haven’t slept.
Some are changing continence pads.
Some are suctioning airways.
Some are managing seizures.
Some are sitting beside children receiving chemotherapy.
Some are listening to monitors in hospital rooms.
They will somehow find a way through tomorrow. Tragically, some don’t. Let me say that again- some don’t. I do not want to underemphasise this point. There are families creaking under the weight of these emotions. Creaking to breaking point. It is devastatingly sad.
The evidence is remarkably consistent. Parents caring for children with disability experience significantly poorer physical and mental health than parents of typically developing children. Rates of anxiety, depression, burnout, chronic stress and sleep deprivation are all substantially higher. Many exercise less. Many postpone their own medical appointments. Many neglect preventive health care because there simply isn’t enough time, enough energy or enough emotional space.
None of the statistics surprise me anymore.
Because I’m living them.
And because I see them every week in my consulting room.
This isn’t a complaint.
I’m not writing because I think my family is extraordinary.
Nor because I think our circumstances are harder than someone else’s.
They’re not.
Every family carries something.
Every carer carries something.
Some burdens are visible.
Many aren’t.
I’m writing because I think we’ve overlooked something important.
We spend so much time caring for the child that we forget to care for the person doing the caring. I call them the invisible patient. And these are the people that need that preventative care approach arguably more than anyone. To be able to care forever. As a doctor, I have spent my career encouraging people to prioritise sleep, exercise, nutrition, mental health, preventative care and time for themselves. Yet carers are among the very people least able to do any of those things. Not because they don’t want to. Because it’s impossible.
The writer, Lloyd Evans and his daughter
***
Fast forward to my next reflection. It’s now 6:17am. We made it out.
Yes…We.
Against all predictions, I managed to creep out of bed at 5:01am.
No lights.
Not a sound.
Straight to the kitchen where I got changed in complete darkness like some sort of special forces operation.
Creatine.
Water.
Headphones.
Flashlight.
Let’s go.
Then I heard her.
Those footsteps.
The same slow shuffle I hear every evening at about 9:30pm
The footsteps that tell me Gloria has climbed out of bed and is coming to find me wherever I am in the house.
Our evenings have become wonderfully predictable.
I put Gloria to bed at 7:30pm
My wife settles our three-year-old at the same time.
Around 8:30pm we cautiously emerge into the lounge room, convinced the coast is finally clear.
Then begins the nightly sprint.
Stack the dishwasher.
Prepare clothes for tomorrow.
Brush our own teeth.
Fold washing.
Lock doors.
Do all the jobs every parent reading this knows only too well.
Finally, around nine o’clock, we sit down together.
Sometimes we talk.
Sometimes we laugh.
Sometimes we’re simply too exhausted to do anything except sit quietly beside each other.
Thirty precious minutes.
Then…
Shuffle.
Shuffle.
Shuffle.
Those footsteps.
It’s become a joke between us. I set my watch by it.
As Gloria reaches me and gently pulls my hand towards her bedroom, I smile at my wife and say, “Nos da”- that’s goodnight in Welsh. Sometimes though, I don’t smile. See you tomorrow night. Because that’s genuinely the next time we’ll properly see each other. Every day. Until Saturday.
So this morning those footsteps came as I was heading out of the door.
I heard the light switch.
Her left hand pressed gently against her left ear as she found me.
That’s Gloria’s sign for, “Can I have my iPad?”
And just like that, her day had started. It felt like mine had just ended. But I should be so happy to see my daughter first thing in the morning.
For a moment I felt everything I shouldn’t.
Disappointment.
Frustration.
Anger.
Self-pity.
My time had disappeared.
Again.
Then came the decision.
Go back to bed defeated. Lie there awake and negative.
Or embrace whatever today was going to become.
So we embraced it today.
With difficulty.
A 5km run later, Gloria wrapped beneath the rain cover of her buggy, me soaked through from the rain, we arrived at one of my favourite coffee shops.
My old stomping ground.
I ordered a coffee.
I chatted to those devoted locals.
And I felt so happy. Gloria was with me, we were out, she was experiencing something different, together.
Now, please don’t mistake this for a Hollywood ending. Not every morning finishes like this.
Some mornings don’t recover.
Some mornings are simply sad.
Some mornings the exhaustion wins.
But today reminded me of something.
Sometimes caring isn’t about waiting for the perfect morning.
Sometimes it’s about rescuing whatever small pieces of it you still can.
Lloyd Evans with his family
***
It’s 9:05pm. You and I both know what’s coming in 25 minutes. Let me quickly reflect on today’s events, and look back a little further. Now, I can be positive in the right moment. I can say I have a positive outlook. People tell me I do. It may look like that. When it suits. But sometimes, I do not. There are times when my wife becomes so frustrated with me. Rightly so. Those moments usually come when I avoid what most people would consider perfectly ordinary family occasions. A child’s birthday party at the local park. A barbecue with friends. To everyone else, they’re simple, enjoyable moments. To me, they’ve often felt overwhelming. Overwhelmingly negative. We’ve argued about it.
Imagine a typical birthday party. A group of dads standing near the swings, coffee in hand, chatting about work, the footy or where they’re going on holiday. Every now and then one glances over a shoulder to check their child hasn’t fallen off the slide. Satisfied they’re fine, the conversation continues. They’re present as fathers, but they’re also present as friends. They’re allowed to enjoy the social side of parenthood.
My experience has been very different. I don’t remember standing in those circles. I remember constantly moving. Following Gloria. Intercepting her before she ate dog faeces from the grass. Stopping her from grabbing another child’s birthday cake before it had been cut. Gently pulling her away after she’d run her sticky hands through another child’s hair because, in her world, that’s simply how you explore. Fishing discarded wet wipes, leaves, stones and whatever else she had discovered out of her hands before they inevitably found their way into her mouth- or her nose. The list is endless.
I wave to the other dads. I rarely join them. Not because I don’t want to, but because I know that within seconds, I’ll be running again. Any conversation I start will be interrupted almost immediately. I fear they just think I have no character, no meaningful conversation to give because I can never spend enough time with them to elaborate. After a while, you stop trying. You become the father on the edge of the party. The one constantly scanning, sweating, chasing, lifting, redirecting and apologising. Caring in these situations is a full-contact sport. By the time we leave, I’m emotionally exhausted, and if I’m honest, socially deprived.
I watch other parents leave having enjoyed an afternoon catching up with friends while their children played happily together. We leave having spent two hours in a state of constant vigilance. We reconvene in the car together. Why do we do it to ourselves we ask? We do it for Gloria. We think she enjoys it. We do it out of love and respect for our daughter and the people who kindly invite us along. Eventually I started saying no. No to birthday parties. No to playground invitations. No to some of those ordinary moments of parenthood that most people don’t think twice about. But avoidance became my way of selfishly protecting myself from another afternoon that left me feeling physically drained and emotionally empty.
This is just one example of something I don’t think we talk about enough. When caring becomes relentless, it’s not just sleep or exercise that quietly disappear. Sometimes it’s friendships. Sometimes it’s community. Sometimes it’s the simple joy of standing with another parent on a sunny Saturday afternoon, talking nonsense while your child plays. Those losses seem small in isolation. Over years, they quietly accumulate. And they affect our health more than we realise.
So what do I really want to emphasise here? The reality is that carers are always going to care. They don’t clock off at five o’clock. They don’t get annual leave from being a parent, a husband, a wife, a son or a daughter. They will continue to care because love, duty and responsibility leave them little choice. I’m not asking for that to change. What I am asking is that we stop accepting poor health as an inevitable consequence of caring. Allow carers to care- but allow them to do so in good health. Give them the opportunity to sleep. To exercise. To attend their own medical appointments without guilt. To spend half an hour reading a book or drinking a coffee while it’s still hot. To nurture friendships, relationships and the parts of themselves that existed long before they became carers. These aren’t luxuries. They are the foundations of good health, and they’re the very things that caring so often takes away.
I don’t pretend to have the answers. I don’t know how we redesign healthcare, workplaces, society or the world to better support carers. But I do know this: awareness must come first. As a GP, I can recognise the problem in my patients. As a father, I recognise it in myself. If this reflection encourages one doctor or just one person to ask a parent, “And how are you coping?” or one employer to show a little more understanding, or one carer to realise they’re not failing because they’re exhausted, then perhaps we’re beginning to move in the right direction.
If we truly want to improve the lives of those who need care, we must also protect the health of those providing it. Indeed, we must recognise the invisible patient in the room.
Dr Lloyd Evans is a Perth-based General Practitioner, father of three and founder of MAN Health Clinic. This article reflects his personal experiences as both a doctor and the father of a daughter with significant disability.
Related:
A doctor’s own bitter pill to swallow: “I struggle to talk about mental health”
5 ways to support a loved one suffering from mental health concerns
