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The Phone Call You Dread When Your Child Has Epilepsy

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When my mobile phone rings, one number pushes my anxiety levels to overload. Before I’ve even answered the call, I’m preparing for the worst.

“Hello, Kelly, it’s Fran from the front office at school, we’ve called an ambulance. Your son is having a seizure.”

This is the call I dread the most.

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I drop everything and run to my car and drive as fast as I can to be by my son’s side. Once when I got the dreaded call, I was with a friend, and she could tell how distressed I was as I yelled “F*ck, f*ck, f*ck” while we ran to my car. My friend insisted she drive. I’m not sure if she’s ever played Gran Turismo, but she got me to my son in a time Daniel Ricciardo would be proud of. Every time an ambulance has been called at school, I’ve managed to make it in time to hold my son’s hand on the journey to hospital and be there when the epilepsy fog cleared.

My mobile phone became a permanent attachment after my son’s first seizure. I will never forget holding his lifeless body or the gut-wrenching feeling that my son was going to die. He was blue, cold and his eyes were fixed, looking to the corner of the room. He was covered in sick, and he’d wet his pants. He was floppy — like a lifeless ragdoll. I called out his name, but he couldn’t reply. He kept having seizures that day, and after almost 12 hours of being pumped full of God awful drugs, the torture stopped. It left my little boy and our family broken. He was medicated with anti-convulsive drugs, and we were told to get on with our lives.

The first time the school rang after the epilepsy diagnosis, my heart sank. It wasn’t because our son was having a seizure but because of his out of control behavior, caused by the meds. Over the years, there have been a lot of phone calls. I’ve honestly lost count. The medication was for all intense and purposes working – it was stopping the catastrophic seizures but had turned our little boy into an emotional mess.

After years of trial and error, things have settled for our son, and a small dose of one medication seems to be working for him. He recently moved schools, which is a big deal for any kid, especially one who needs routine.

It wasn’t long before I received a call. My son’s behavior had gotten him into trouble. A long and serious chat followed.

A week later the school called my mobile phone again. I thought, What has he done now? But this wasn’t like the previous call. “Your son is on the bed in sick bay; there’s been an incident.”

Bloody hell, has he had a seizure, and they’ve not called an ambulance? Why didn’t they call me as soon as the seizure started? The adrenalin was starting to kick. I was getting ready to run to my car.

But before I managed to set off on my Cathy Freeman-like sprint, the teacher explained my son was playing cricket and had copped a ball in his eye.

“Oh, is that all?” I thought to myself. Relief flooded this mom!

Wow. This was the first time I’d received a “normal” call. I know an eye injury can be serious, but in the scheme of things, I’d take “a ball to the eye” call over a “we’ve called an ambulance” call any day.

I may have been a little bit happier than most when I collected my son with a throbbing black eye from school, but it was exciting not to see him strapped to a stretcher receiving oxygen. I guess it’s all relative.

(For the record, I did take my son to the doctor to get his eye checked and it was fine.) Awesome. Just add ice!

Follow this journey on Ragdoll Mummas.

Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 21, 2015
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