Moms of Epilepsy

Jane – Mother of Rowan

Reflections

Jane's son, Rowan

1. The First One

I remember my son's first seizure. He was nearly two years old. There had been many concerns regarding his developmental milestones and he'd been making gains. We felt proud of his progress and concerned about next steps.

When his seizure started, I remember my partner immediately starting to time it. How did she know to do this? I called 911. I don't remember the call, what I said. I just remember looking at his small body completely stressed, full tone, shaking, nothing calm, no control.

How was he breathing? How would this stop? How could I tell the 911 operator what was happening? Why won't it stop?

Five minutes passed. After another few minutes I realized that the biggest threat to his development and progress was actually in him ... when the next seizure came a few days later, EMS called me at work to tell me what was happening and to go to the hospital. I thought it was a bad joke. I told him that the seizure had actually happened earlier in the week—that he had it wrong. And then I realized it wasn't a mistake. And I cried. I wasn't with him.

2. A New Normal

I don't think about Rowan's seizures everyday anymore. I don't actively think about when the next one is coming; I don't actively think about how it will present or how long it might be; I don't actively think about who will be with him or if anyone will be hurt—if he will be hurt; I don't actively think about changes in meds or changes in doses of the meds that for now seem to control his seizures to some extent.

But I do consider these things. As Rowan's parents, we have planned for the next seizure as well as we can and it is inactively present and built into our lives on a routine basis. But we cannot prevent it. The knowledge that it will happen is always present. The last time Rowan had seizures it had been 18 months since the last significant seizures. Some normal illnesses were going around his elementary school. He had no symptoms of illness. His med doses were just on the fringe of needing to be increased, but he had been taking them twice a day as prescribed ... His doctor seemed genuinely frustrated to hear about the seizures and the 20 minutes of unresponsiveness that occurred between them.

Only in his doctor's frustration did I realize how let down I also felt. Not just scared and worried for my son, but also disappointed in the realization that his seizure disorder, which is thankfully controlled by meds, can still come out of nowhere.

3. Running for Epilepsy

I started to run out of general fitness, but I only considered myself a runner during a time when things seemed fairly uncertain and out of control with my son's health. He started to have seizures in the fall and when spring hit I couldn't help but put my shoes on and run ... and I did some long runs! I registered and ran in several cause events. The only significant run I ever registered for was a half marathon. I'd put a lot of training into it and the night before race day I was ready to go! But then I got the phone call ... he had two seizures in a row and I needed to drive home and be with him. The only running event that I participate in now is Katie's Run.

Jane
Haliburton, Ontario

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