Every morning and every night, Muji’s medications stand between her and the unknown. They are more than tiny pills and measured syringes; they are promises—promises of control, of calm, of stability. And yet, those promises can shatter with a single missing dose.
Muji has cerebral palsy, epilepsy, and multiple disabilities. Her medications don’t just prevent seizures; they guard against reflux and constipation, weaving together a fragile balance that keeps her body at ease. Among them, one stands apart—the emergency seizure medication. It’s the last defense when time stretches beyond five minutes and the seizure refuses to loosen its grip.
That morning, the balance tipped.
The Weight of a Missing Dose
The day started as any other. Muji emerged from her shower, fresh, warm, safe. And then—her jaw tensed. Her teeth pressed together. Slow, rhythmic chewing began.
A quiet signal. A warning.
I reached for her morning medications, my hands moving with muscle memory. One by one, she took them, and the chewing softened. Her body stilled. Relief. But only briefly.
Sleep overtook her—not the peaceful surrender of rest, but something heavier. The kind of exhaustion that pulls deep, that doesn’t let go. And when she finally woke, she was caught in another seizure.
I had one dose left. Just one.
I gave it to her, watching the tension in her limbs melt away. The seizure stopped, but the medication’s grip did not. It dragged her back into sleep, forcing her body to surrender once more.
And all I could think was—what if I hadn’t had that last dose?
A Seizure and a Desperate Call
That afternoon, Muji’s support worker arrived for her shift. She found Muji in the throes of yet another seizure.
I swallowed hard. “Start the stopwatch.”
Muji’s mouth worked relentlessly, her chewing rhythmic, disconnected from the world around her. Her eyes twitched rapidly to the left. Then she opened them wide—staring upward, searching, lost.
I checked the time. Five minutes.
I gripped my phone. Dialed 000.
As I spoke to the operator, my eyes never left Muji. Still seizuring. Still trapped in a body that refused to obey.
And then—silence.
Her body stilled.
I glanced at the oximeter. 79.
My breath caught. My fingers clenched around the phone. “Muji.” No response.
Then—a sharp inhale. A gasp pulled from somewhere deep. Alhamdulillah. The oximeter climbed. 99.
Relief lasted only seconds.
Her mouth began chewing again. Her eyes twitched. The seizure wasn’t done with her.
The stopwatch kept running. Ten minutes. Fifteen. Twenty.
Finally, the paramedics arrived. A sharp injection to her thigh. A few tense moments—and then, at last, stillness.
It was over.
Caregiver Exhaustion and the Uncertainty of Supply
The paramedics assured me Muji didn’t need hospitalization, but her emergency medication was gone. I had nothing left. They called six pharmacies, one after another, each one repeating the same response:
Out of stock. No timeline. No certainty.
Until, finally—one pharmacy. Three doses left.
It wasn’t enough, but it was better than nothing. Better than waiting for the next seizure with empty hands.
That night, Muji was free of seizures. But by morning, fatigue hung heavy in her body. Confusion clouded her eyes. The battle had ended, but its weight remained.
Medication shortages are not just frustrating—they are terrifying. No caregiver should have to feel the creeping dread of an empty supply. No family should have to fight for a system that fails them.
Muji’s journey is one of resilience, faith, and adaptation. But she shouldn’t have to fight this hard. Caregivers deserve better. Our loved ones deserve better.
Have you ever faced a medication shortage? How do you navigate the uncertainty? Let’s support each other and find ways to push for change.
Until next post, stay blessed.
Nur/Muji's mum. 💙
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