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.

Beyond IS #4: Decade of IS

Some decades can just fly by and you lose track of what actually happened, not even believing that ten years have passed. Other times, it can feel like an eternity.

To begin - apologies on our behalf for not being as active on our social channels the last few months as we have been. While we continue to navigate our organizational goals, living through Emma’s epilepsy took a toll.

Mentally and physically.

Emma’s doing OK - we continue on this circular journey of new medications and challenges to make sure she is living the best possible life. It’s hard to pinpoint what works vs what doesn’t, but we’ll always explore options as they are presented.

This weekend, many reflect on what, or who, they are thankful for. Passing on gratitude to others that have had some impact on their life. That holds true for us as well. We are beyond thankful for all of your support through the years. It has helped us, and others as, we share our journey. We are always thankful to our medical teams. They continue to push and try to find the next best thing for Emma. She continues to be an enigma, but they continue to search for answers.

Infantile Spasms entered our vocabulary ten years ago. It’s a moment in time that we can recall like it was yesterday. Since then, there have been many life moments that have almost shifted into the almost forgotten state, but news of the diagnosis will forever be etched in our memories, and have helped mold who we are today.

While it’s impossible to never look back, we continue to look ahead and peer down that road of uncertainty, not knowing if we are truly ever ready for what’s to come. When that fork approaches, we’ll be ready for it. We have to be. Emma takes on everything that is thrown her way.

It hasn’t been fair. Not for Emma. Not ever.

We use that as a motivator.

We continue to advocate and are working towards making Motion 68 a reality in our schools. Our partnership with SickKids remains strong and we are working closely with the IS clinic to make life changing improvements for children with infantile spasms.

As we wrap up this weekend, thank you for your words, generosity and support.

Together, we can STOP IS.

- Daniel