There are moments in life when time seems to stretch and fold in strange ways. The past few weeks have been like that for us. Days that felt impossibly long, nights with almost no sleep, and moments where fear and hope lived side by side.
It started slowly. Lia had been irritable for about two weeks. She cried more than usual, slept very little, and something just didn’t feel right. I took her to the emergency room earlier in the week, hoping it was something simple that would pass.
But when we arrived at the Zuid-Afrikaans Hospital to see the paediatrician, everything changed quickly. She listened to Lia, looked at her, and admitted her immediately.
Lia had rhinovirus and pneumonia. Her heart rate was high. She needed oxygen and physiotherapy to help her lungs clear. Sitting next to a hospital bed watching your child struggle to breathe is something no parent is ever prepared for. The machines, the wires, the constant monitoring. Every sound suddenly matters.
At the same time, the doctors were trying to understand what was happening with Lia’s epilepsy. She had previously been diagnosed with West Syndrome, a rare and serious form of childhood epilepsy. Her EEG had shown hypsarrhythmia, a chaotic brain pattern that doctors watch closely.
We were waiting anxiously for the neurologist to review the results.
When Dr Lamb arrived at the hospital, the room suddenly felt very quiet. He had the EEG results. He sat down next to me and began explaining what he was seeing.
The hypsarrhythmia was gone.
Completely gone.
Apparently this happens in less than five percent of cases. Instead, her epilepsy had evolved into Lennox–Gastaut syndrome. The name sounds frightening, but in Lia’s case it is actually a better outcome. It can often be managed with fewer medications, and it allows the brain more opportunity to continue developing.
As he was talking, I started crying.
Weeks of fear, exhaustion, and holding everything together suddenly came out all at once. Dr Lamb stood up, pulled me into a hug, and kept talking gently while I cried.
He told me he had rarely seen such a rapid shift.
In that moment it felt like a miracle.
But the week wasn’t finished with surprises yet. The doctors were worried that Lia might be aspirating when she swallowed, meaning liquids could be going into her lungs instead of her stomach. This could explain the coughing and fluid in her chest.
They arranged a video swallow study. I had to hold Lia while a speech therapist fed her different textures of food and liquids mixed with contrast so they could track the movement on an X ray screen.
Watching your child swallow while doctors study every movement of the liquid is surreal. You find yourself holding your breath along with them.
Then another unexpected moment arrived.
She wasn’t aspirating.
You could clearly see the liquids and food moving down her esophagus rather than into her lungs. Even the speech therapist seemed surprised. It was one more piece of good news in a week that had started with so much uncertainty.
There are still decisions ahead. The doctors are discussing the possibility of a MIC KEY tube in the future to help with feeding and medication if it becomes necessary. As a parent, even hearing those words can be overwhelming. It is something I am still trying to wrap my head and heart around.
But through everything, Lia keeps showing us who she is.
A fighter.
As the antibiotics started working and the oxygen levels slowly came down, she began returning to herself. The little sounds she makes when she is happy came back. The laughing returned. She started looking around the room again, almost as if she was telling us she was ready to leave that hospital bed behind.
And eventually, we did.
Walking out of that room felt like stepping back into the world after holding your breath for days. The care we received at the Zuid-Afrikaans Hospital was exceptional, and I understand now why our specialists wanted us there.
Recovery will take time. The doctors expect at least a month at home before we look at the next steps. For now we are taking things one day at a time.
No seizures.
Better breathing.
More smiles.
And one very tired mom.
While Lia and I were in hospital, another part of my heart was somewhere else. My son has been staying with his Nanna, Oupa and Jane. Thankfully he has been living his best life, riding his bike with a headlamp until ten at night. He understands where we are and why we are here.
The other night he insisted that he wants to speak to the doctor himself.
That moment made me laugh in the middle of everything.
These past weeks have been exhausting, emotional and overwhelming. But they have also reminded me of something powerful.
Children are unbelievably strong.
Doctors and nurses do extraordinary work.
And love has a way of carrying you through moments you never imagined you would face.
Lia is strong.
And we will keep fighting right beside her. ❤️🩹
