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

Beyond IS #3: What a ride

A few days ago we posted a picture of a group of Spinners coming together to raise awareness for epilepsy.

But, that’s not the ride I’m referring to. Six years ago we opened up our world to the Epilepsy and Infantile Spasms community as we turned our private journey of IS into a grassroots initiative. Named after our daughter Emma, we launched Emma IS.

The name merges her name and the acronym of IS but it’s so much more. It’s the concept that Emma IS who Emma is. There is no benchmark or measurement that we hold her to. She is the energy and inspiration behind our ride.

We started just trying to share information about IS and how critical an early diagnosis is. Trying to build a place where families can ask questions or find resources. We didn’t have that and wanted to do whatever we could to help others. That led to a collaboration with SickKids for research funding and have some amazing work being done there, and collectively with other hospitals in Canada.

Then, realizing that we need to get more people taking about epilepsy, we delegated to the TCDSB Board of Trustees to have Purple Day recognized and celebrated in all schools every year. We need to continue to break the stigma surrounding epilepsy.

What happened next was something that never crossed our minds. Sitting in the Ontario legislature hearing Motion 68 pass was, and still is, a surreal moment. Ensuring a safe learning environment for every child was monumental. This was followed with a tour of media engagements enabling us to share this news across various communities across the province.

At the end of last year, we were nominated to the Infantile Spasms Action Network (ISAN) – a group of 30+ international organizations dedicated to raising awareness of infantile spasms.

Together We Can Stop IS!

What’s next? We don’t know. It’s a road that we travel daily and manage the obstacles when they arrive.

But on March 26, this year, and every year, we celebrate Purple Day.

​- Daniel