Beyond IS: What I Want You to Know About Our Journey with Epilepsy

When I think about our journey with epilepsy, I often wonder what I wish others truly understood, not out of frustration, but a hope for deeper connection, compassion, empathy and awareness.

Every epilepsy journey is different.

No two stories are the same. While I know people share suggestions or stories with good intentions, Emma’s journey is uniquely hers. What works for one person may not work for another. The most meaningful thing you can do is see her, not as a comparison, but as an individual with her own path.

Epilepsy has changed us…and that’s okay.

This journey has reshaped me and my family in many ways. My priorities have shifted. The things that once felt important no longer hold the same weight. Some relationships have changed, too. But these changes haven’t come from a place of bitterness; they’ve come from growth, perspective, and a deeper understanding of what truly matters.

There has been trauma alongside the growth.

Emma’s diagnosis and brain surgery were incredibly difficult experiences for our family. I

don’t know if I’ll ever fully get over it. We were navigating not only her physical health, but also the emotional toll it took on all of us. Healing has been both physical and mental, and that part of the journey is just as real.

There is progress…even when there isn’t a cure.

Emma continues to have seizures regularly. Treatments like medication, VNS, and the

Corpus Callosotomy have helped improve her quality of life, but they have not taken epilepsy away. She lives with refractory epilepsy. And still, we hold onto hope. Hope for new treatments, new understanding, and brighter days ahead.

Joy and difficulty can exist together.

We are a happy family. We laugh, we celebrate, and we find joy in everyday moments.

At the same time, life can be challenging. Emma needs a great deal of support, and simple routines can take more time and energy. Both of these truths exist side by side.

Advocacy isn’t always easy.

Our work to raise awareness hasn’t always been met with open arms. Sometimes the resistance is quiet, unspoken. And, sometimes it is quite loud. I’ve been disappointed by organizations and people more times than I wish to remember, but I hope that the resistance doesn’t come from a place of unkindness, but perhaps from uncertainty or fear. Still, we continue because awareness matters, and so does Emma’s story, our story.

Listening matters more than fixing.

You don’t need the perfect words. In fact, one of the most meaningful things someone once said to me was, “I don’t know what to say.” And then, they listened. That presence, that willingness to simply be there, is more powerful than any advice.

Epilepsy is more common than you may think.

It affects 1 in 100 Canadians. Chances are, you know someone living with epilepsy, even if you don’t realize it.

It can touch anyone, at any time.

Epilepsy doesn’t discriminate. It can enter anyone’s life, at any age, without warning.

I feel like I have more to do.

I have this drive inside of me to keep pushing and advocating. I feel like my work is never really done. Sometimes this feeling is powerful, but it is also scary too.

Small acts of support mean more than you might realize.

Wearing purple on Purple Day is a simple gesture, but it carries deep meaning for families like ours. It tells us that you see us, that you care, and that you are willing to stand with Emma and the rest of the epilepsy community in a visible and supportive way.

If there is one thing I hope you take away from our story, it’s this:

Approach others with empathy, with openness, and with a willingness to listen. You don’t need to have the answers, just the willingness to listen. I understand that not all people will be able to understand all that we’ve been through, and that’s okay. But I hope people position themselves in a place of listening and empathy.

About Emma IS

Emma IS was created from our family’s journey to raise awareness about epilepsy and Infantile Spasms, to support research, and to help other families feel less alone.

Through advocacy, education, and community, we hope to turn our experience into something that creates understanding, connection, and, one day, change.

Beyond IS: "She's full of life"

"She’s full of life!"

The statement stopped me in the middle of a conversation. It was my mom who said it, so casually, so truthfully. And she was right. Emma is full of life. She always has been.

If you’ve followed Emma’s journey—our journey—you know there have been more than a few moments filled with pain, confusion, and that aching refrain: Why me? Why her? Even during the high points, that question lingered. The grief of a diagnosis doesn’t disappear just because you’ve learned to smile again, and you figured out how to cope.

But over the years, something shifted in me, not all at once, and not in some dramatic moment of enlightenment. It happened gradually. I started noticing that I didn’t always think about epilepsy when I thought about Emma. There came a day, as I cuddled with her, when I caught myself thinking, I’m just so glad she’s mine. And that was it. No, but I wish… Just pure, uncomplicated gratitude.  She’s mine.

For years, my internal monologue had been, I’m happy she’s mine, but I wish she didn’t have epilepsy. 

And now? I’m happy she’s mine. Full stop.

If you’ve ever met Emma, you know… she’s Tigger. She is joy in motion, always smiling, always connecting, always being. That smile of hers doesn’t make sense when you consider what she’s been through. But somehow, it’s always been there.

When she went in for brain surgery, I was terrified we might lose that part of her. They told us that some of her mannerisms could change. I kept thinking: What if she stops smiling? What if that light dims?

But the next day, post-surgery, she smiled. (I have a photo to prove it.) And I breathed again.

There are ebbs and flows in our journey. I know there will be more days when I ask myself Why me? Or, why her? The grief with this diagnosis isn’t linear. But right now, in this moment, I’m living in the thank God it’s me.  Thank God it’s her.  Because, as my mom reminded me, Emma is full of life, in every sense of the word. And that is rare. How many people do you know who are truly full of life?

Emma IS. She embodies it. She radiates it. She gives it.

And, how lucky am I to be her mom? I gave her life, but she’s given it right back to me, again and again.

- Monica

Beyond IS: Routine

Some look at routine as boring. Complacent. Or just dull. Nothing exciting could possibly come from routine, right?

For me, each morning has its ebbs and flows to start the day. A debate of what lunch to make for the kids - is it a leftover pizza day or a sandwich or wrap day. Grapes or cucumbers or strawberries. Whichever, so long as it’s eaten. Then a question of whether it’s a uniform or civvies day - which could add an extra 5 minutes of chaos to make sure the “look” is right.

The drive to school adds to that routine - although, a slight change to the route can add or save minutes which can shift our parking lot ritual. Then, the workday begins - be it remote or in the office. Dinner. Rest. Sleep. And, repeat.

Monday to Friday. Consistency. Knowing what to expect. You can look at it from both sides as to whether that is good or bad. Many despise routine.

However, epilepsy has taught me otherwise.

Emma’s daily behaviour has been like clockwork. Waking up between 5-6am and having seizures. Yeah, it’s bad, but it’s become normal.

Thankfully, they are controllable, and within a few minutes, they stop and she’s in a “normal” state.  I think I’ve become immune to these mornings. It’s expected.

It’s routine, again.

But then, mornings like today roll in and routine goes out the window.

It’s been over 6 months since we were here. There have been some bad days along the way, but nothing that reached today’s level. Today took a toll on her. In and out of naps, balance issues that limited her mobility. And yet, at the end of the day, she’s back to her energetic, playful self.

When days like today come, I crave routine.