I have started writing about our last stay at Kloof Hospital so many times.
Every time I stop.
Maybe because I still do not quite know how to put those weeks into words.
By the time we arrived at Kloof, Lia had already been through more in a few months than most people will experience in a lifetime.
HIPPS.
Seizures.
Pneumonia.
RSV.
ICU.
Oxygen.
Surgeries.
A feeding tube.
A leaking stoma.
And hospital room after hospital room.
We were tired before this admission even started.
Not normal tired.
The kind of tired that lives inside your bones.
The kind where you stop unpacking the hospital bag because you know you will probably need it again.
The kind where the smell of hospital soap feels familiar.
This time, it started with Lia’s Mic Key site.
It had been a problem for weeks. It leaked. Her skin became raw. We tried dressings and creams and barriers and everything we could think of.
Eventually the Mic Key was removed and the opening was surgically closed.
I thought that would finally be the end of it.
It wasn’t.
The wound opened again.
Then it started leaking.
Then it became infected.
And suddenly we were back in hospital.
Again.
On 1 June Lia went back to theatre so that the wound could be closed.
I remember thinking, please, just let this work.
Such a small sentence.
Such a massive prayer.
But the infection had already become something much bigger.
Klebsiella.
And then the word no mother wants to hear.
Sepsis.
Back to ICU.
Machines.
Drips.
Antibiotics.
Monitors.
Numbers that suddenly become the most important numbers in your entire world.
You learn to sleep while monitors beep.
You learn which alarm matters and which one you can ignore.
You learn to read a nurse’s face before she says anything.
You learn that you can be absolutely terrified and still remember medication times, doctor names, blood results and exactly how many millilitres went through a syringe.
Because you have to.
There is no other option.
For almost two weeks, ICU became our world again.
And somewhere in the middle of all of that came 10 June.
My 44th birthday.
For the first time in my entire life, I spent my birthday without my people.
No family.
Just me, alone in Pretoria, with my little girl in hospital.
Birthdays have never needed to be extravagant for me. I don’t need a huge party or expensive gifts.
But I need my people.
I need the familiar voices. The hugs. My family. The people who know me beyond hospital corridors and medical terminology.
And that year, they weren’t there.
I was 44 years old, sitting in Pretoria, feeling incredibly alone.
It was depressing.
There is no prettier word for it.
I was sad.
Properly, deeply sad.
Because while everyone was sending birthday messages and wishing me a happy birthday, there was very little about that day that felt happy.
I didn’t want a cake.
I didn’t want presents.
I just wanted to be home.
I wanted Lia to be well.
I wanted my family around me.
I wanted, just for one day, to feel like myself instead of Lia’s mom in another hospital room.
And I think that birthday made me realise just how much these hospital admissions take from the parent too.
You become so focused on keeping your child alive, comfortable and safe that your own life quietly disappears somewhere in the background.
Days pass.
Weekends pass.
Birthdays pass.
And you keep going.
Because your child needs you.
I hated seeing Lia in another hospital bed.
I hated watching another cannula being inserted.
I hated that she knew what nurses were going to do before they even touched her.
I hated that hospital life had become normal to us.
Mostly, I hated that I could not take any of it away from her.
I am her mom.
I am supposed to fix things.
Instead, sometimes all I could do was stand next to her bed, stroke her hair and whisper,
“Mommy is here.”
Again.
And again.
And again.
Outside the hospital, life continued.
People went to work.
They bought groceries.
They complained about traffic.
They made dinner.
They went home and climbed into their own beds.
Meanwhile, our entire universe existed inside one hospital room.
That is the strange thing about having a critically ill child.
The world does not stop when yours does.
Somewhere in the middle of all of this, I realised that since the end of February, Lia had spent around 38 days in hospital.
Thirty eight days.
She was four years old.
There were moments during that admission when I felt completely empty.
I had nothing inspirational left to say.
No brave words.
No motivational quote.
I was just a mother who was tired and scared and desperately wanted to take her little girl home.
But then Lia would do what Lia does.
She would open those beautiful eyes.
She would give me a tiny smile.
She would show us, once again, that somewhere inside that little body was an enormous amount of fight.
Slowly, things started changing.
The infection came under control.
The wound began healing.
She became stronger.
Eventually her gastrostomy tube was placed again, this time smaller, a 14 French tube, with the hope that her little stomach and skin would finally have a chance to heal properly.
And eventually came the words I had been waiting for.
We could go home.
There is nothing quite like packing a hospital room after a long admission.
Every bottle goes back into the bag.
Every charger.
Every blanket.
Every syringe.
Every little piece of the strange life you created inside those four walls.
And then you walk out.
Not quite the same person who walked in.
Our last Kloof admission took something from me.
I think every hospital stay does.
But it also gave me something I had been waiting a very long time to see.
My little girl started coming back.
After months of HIPPS, seizures, medication, illness, ICU and exhaustion, there were moments where I could suddenly see Lia again.
Not the patient.
Not the diagnosis.
Not the child attached to monitors.
My daughter.
Her eyes were brighter.
She was more awake.
More present.
More herself.
It was as if, very slowly, somebody was switching the lights back on.
And maybe that is why this admission is so difficult for me to write about.
It was one of our hardest.
It was the admission where I spent my 44th birthday alone in a city away from home, desperately missing my people.
It was the admission where I felt exhausted, isolated and, at times, completely broken.
But somewhere amongst the infection, the fear, the ICU nights, the loneliness and the tears, it also became part of the road that brought my little girl back to me.
We are still healing.
Her body is healing.
I am healing.
Our family is healing.
There are still medications.
Still appointments.
Still seizures.
Still things that frighten me more than I know how to explain.
But today she is home.
Today I can hear her.
I can touch her.
I can look into those beautiful eyes and see more of my little girl looking back at me.
After everything we have been through, I have learned not to take ordinary days for granted.
Ordinary is magnificent.
A birthday surrounded by your family is magnificent.
Sleeping in your own bed is magnificent.
A day at home is magnificent.
A smile is magnificent.
A little girl waking up to the world again is nothing short of a miracle.
And for now, that is enough.
