Today feels like the right day to sit down and look back on the past few months. I think when you’re living in survival mode, you don’t always realise how much has actually happened until you stop and breathe for a second.
And honestly… what a season it has been.
April feels both five minutes ago and five years ago.
After Lia’s Mic-Key was inserted in March, I really hoped it would help us. I wanted things to become easier for her. Easier for all of us. But almost immediately, things became complicated. The site never healed properly. It leaked constantly. It bled. The skin around it became raw and angry from stomach acid burning her little body.
Then RSV hit our house over Easter.
We were all sick, but Lia’s chest became wheezy and heavy, and mommy instinct kicked in hard. By Tuesday morning, I packed the car and drove to Pretoria again, knowing deep down we weren’t going home anytime soon.
What was meant to be a short hospital stay turned into 18 days in ICU.
Those weeks broke something in me, if I’m honest.
There’s a kind of exhaustion that sleep cannot fix. ICU exhaustion is different. Watching monitors. Listening to oxygen alarms. Sleeping with one eye open. Trying to make medical decisions while running on adrenaline and fear. Trying to answer work messages while your child is attached to oxygen and wires. Trying to still be “mom” to your little boy waiting at home.
I carried so much guilt.
Guilt for the tube.
Guilt for doubting myself.
Guilt for leaving Nélius again.
Guilt for not being enough for everybody at the same time.
Eventually, the decision was made to remove the Mic-Key completely. They even tried a larger size first, hoping it would stop the leaking, but it only made things worse. In the end, Prof van Niekerk removed it and surgically closed the hole.
I was devastated.
Not because I wanted the tube itself, but because I wanted relief for Lia. I wanted one thing to work without complications. Just one thing.
But slowly, things started improving.
Her infection markers dropped dramatically.
The wound started healing beautifully.
Her chest recovered.
The oxygen came down.
The ultrasounds were clear.
And after almost three weeks in ICU… we finally came home.
I still remember holding her properly again for the first time once we got home. Just lying with her sleeping on my chest in the quiet house after weeks of hospital noise and machines.
I didn’t realise how much I needed that moment too.
Since then, we’ve tried getting back into some kind of rhythm again. But the truth is, recovery isn’t linear. Not for Lia. Not for me either.
A month in ICU changes you.
The weeks after discharge were hard. Really hard.
Lia stopped sleeping properly. She started moaning almost constantly. Day and night. Waking up screaming. Some days, it felt like she wasn’t fully “there.” Her eyes would drift closed, and she would just… exist in this strange, disconnected state.
I knew something was wrong.
We went back to Pretoria. I pushed for another EEG before the appointment because every instinct in my body told me we were missing something.
The EEG showed significant abnormalities related to her Lennox-Gastaut syndrome. Not hypsarrhythmia again, thank God, but still serious. Prof Lamb explained that her brain was almost slipping into a sleep state, with bursts of epileptic activity interrupting everything.
He told me neither he nor the EEG team had seen an EEG quite like Lia’s before.
Then he said something I don’t think I’ll ever forget:
“We need to wake her brain up now.”
And suddenly everything made sense.
Why she seemed distant.
Why she wasn’t herself.
Why she couldn’t settle.
Medication changes followed. Keppra stopped. Urbanol was added. Other meds were adjusted carefully and slowly because with Lia, everything has to happen gently. Especially with her history of West Syndrome.
And thankfully… we’ve started seeing small improvements.
Tiny things most people would never notice.
Better sleep.
A little smile.
More awareness.
A laugh.
Longer moments of connection.
Those things feel massive to us now.
Even now, though, it feels like we can never fully exhale before the next thing happens. Just when we thought the wound was finally settling, the stitches started dissolving, and suddenly the Mic-Key hole began leaking again. And it’s a mess. Physically messy, with food leaking out constantly, trying to keep the skin clean and protected, worrying nonstop about infection creeping back in. But mentally too… I can feel myself wanting to break some days because I genuinely don’t know how we can face another hospital admission again.
I’ve found myself calling in favours from friends around the country, asking doctors and medical friends for advice, sending photos, trying to figure out what’s normal and what isn’t. Today especially, I’m worried about the wound. It’s leaking a lot, it’s painful for Lia, and honestly, I’m just so tired of moving from one problem straight into the next without ever really catching our breath.
The wound itself is also finally healing well. I’m still dressing it daily, and there’s still a tiny leak while the stitches dissolve, but compared to where we were weeks ago, it’s so much better.
I wish I could say I’m okay too.
Truthfully, I’m struggling a bit.
I think years of sleep deprivation, stress, grief, hospitals, seizures, and survival mode eventually catch up with you. February and April pushed me beyond anything I thought I could handle. Some days, I still feel like my nervous system is stuck in ICU.
But we are home.
And right now, home matters.
Nélius is laughing again.
Charlotte is back, glued to Lia’s side.
The machines are quieter.
The house feels softer again.
And despite everything… Lia keeps fighting.
She keeps finding her way back to us.
Thank you for walking this road with us.
For every prayer.
Every message.
Every donation.
Every kind word.
Every person who quietly checks in.
Some days, your support is the thing that carries me through another night.
We’re still taking things one day at a time over here.
Still hoping for more good days than bad ones.
Still believing better days are coming.
Love,
L & L 🤍
