Our Epilepsy Journey—The First Seizure

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When our daughter Avery was eight months old she was diagnosed with a chromosome 3P deletion/9P duplication disorder. Doctors told us to expect some devastating things resulting from this rare genetic condition. Some came true, but thankfully most did not.

The one thing they didn’t tell us to expect was epilepsy.

One afternoon I put Avery down for her nap which seemed to last longer than usual. When I stepped inside her room to check her I knew something was wrong. There was vomit on her crib rails, she was blue, and she wasn’t breathing.

I scooped her up, limp in my arms and called 911. I must’ve screamed because our son, who was only six at the time, had come out from his room and was looking at me with fear in his eyes.

“Sebastian don’t be scared.” I said. “In a few minutes paramedics will be here to help Avery.”

I didn’t understand what was happening. I told our son to keep out of the way and that everything would be okay. When the firetruck arrived our little guy was standing in the hallway, pressed up against the wall as flat as he could be. He said, “I’m okay mummy. Don’t worry about me, just please let Avery be okay.”

This would’ve broken my heart if it hadn’t already been shattered into a million pieces.

The ambulance arrived minutes later. They worked on Avery on the living room couch for what seemed like hours. It’s a blur now, but I recall our neighbour from across the street, a pediatrician, standing behind me. I quickly called my in-laws to come to take care of our son while I road with Avery to the hospital.

Avery was unconscious for nearly three hours. They ran tests in the ER including a lumbar puncture, a CT Scan and blood work — all came back normal. We were quarantined nonetheless for 48 hrs pending the results of a meningitis culture.

Three nights spent in the pediatric ward with no clear answers other than a virus may have triggered a seizure (several actually) and we would have to wait to see if it was an isolated incident or if it was epilepsy.

We later learned Avery had experienced a status epilepticus seizure of which she would have several more over the following year. Status epilepticus seizures are the kind that may not stop without medical intervention. They can last thirty minutes or more and they often did.

We nearly lost her that day and it was the most frightened and helpless my husband and I have ever felt.

Over the next few years we worked with doctors to find the best way to manage Avery’s seizures. We were lucky to find the right combination of medications that are working well for her.

The fear has softened now, but it’s always lurking under the surface. That’s the thing about the unpredictable nature of epilepsy—you can never fully let your guard down.

Sometimes it just hits me out of the blue, how serious and stressful epilepsy can be. One ordinary and uneventful afternoon, Avery was home with my husband and I was out picking up groceries. On my way home I heard sirens and I saw a firetruck screaming in the direction of my house. My heart stopped while I waited to see if the truck would turn down my street.

Thankfully it carried on past. I cried the rest of the way home and carried on sobbing into my house. I couldn’t stop. But then I did. Because when you’re the parent of a child with epilepsy, you wipe your tears, hug your babies and carry on. Because what other choice do you have?

As Avery got older and more involved in a variety of activities, we began to meet other families who had similar experiences with epilepsy. Avery joined a cheer abilities team and many of her teammates have seizures.

On the first day of practice Avery was greeted by her first cheer friend, Grace. Grace was bubbly and bouncy and friendly and fun. All of Avery‘s favourite things. She followed her around like a shadow. Grace had epilepsy too.

Tragically, Grace died two winters ago. SUDEP stole her from her family and friends way at ten years old. Trying to explain to our daughter that her friend was suddenly gone was incredibly difficult. She couldn’t understand how this could be. When I told her, she sobbed and banged her fists on the kitchen island pleading, “Please mummy, please make her be not dead.”

As parents, our hearts are broken for Grace’s family. To lose a child is unimaginable.

Yet, as a parent of a child with epilepsy we can imagine it. Because many of us have come close. We’ve watched a child turn blue or lie unresponsive. We try not to imagine it, but we do.

And we know that what Grace’s family is going through could have been any of us. SUDEP-Sudden Unexpected Death in Epilepsy looms in the back of all of our minds.

Being responsible for a child who has seizures is difficult. There is always some level of fear. For me, the idea of letting our daughter out of our sight seemed impossible.

Then one day my friend told me about Sunny Days Camp—a camp for children with epilepsy. I hesitated, because that’s what fear does; the same fear that threatened to rob my child of the life experiences she deserves.

Summer camp is an experience that every child should have if they want it. And Avery wanted it. So my husband and I signed her up for five weeks of Sunny days Camp—out of our sight and completely in the hands of strangers. Honestly, we were a bit of wreck.

This camp is run by people who understand epilepsy. Some of the counselors have seizures themselves. They know what to do. They normalize epilepsy and remove the shame and stigma.

They also took away our fear. And that is what we are most grateful for as parents. My husband and I were able to drop our child off at camp, say goodbye and leave her to experience life like any other child.

Avery, and Grace, and their friends spent summers together boating and making memories. They did crafts and splashed in the river and went on exciting excursions like medieval times, horseback riding and rock climbing.

When I arrived at camp after the first field trip, I spotted Avery walking towards camp from the train station. She looked tired and sweaty and the absolute happiest. When she spotted me she ran over saying, “Mom!! I went on a train…and a boat!!” Like it was the most incredible treat in the world.

I wanted to cry because I knew my fear had been holding her back. This camp was finally a chance for her to experience independence and joy in a safe and nurturing environment.

Covid put this incredible camp on pause. And boy have we missed it. But with the world tippy toeing toward opening up again, we look forward to camps and trips to the park with friends and all the sweet things our kids love to do.

We’re so grateful for Epilepsy South Central Ontario for supporting families like ours and making life with epilepsy easier in so many ways. 💜