So, you know that feeling you get when you know your dentist appointment is coming up? You know it's going to happen, but you're already dreading the arrival of the appointment date. That feeling in the pit of your stomach, knowing there's going to be all that scraping and probing in your mouth. The smell of the latex gloves, paired with the artificial toothpaste flavour they offer you, which somehow makes you gag when the dentist reaches those back teeth and tries to polish the inside…. yeah, that feeling.
Now imagine that feeling amplified, knowing there's no rescheduling, no getting out of it, and no knowing exactly how uncomfortable it's going to be when the day arrives. It's been sitting in the pit of my stomach every month for the last six months.
I can't even begin to name this weight. It's been hard because I haven't had the luxury of switching it off. While trying to endure quietly, stay on top of everything and optimize whatever I can, I'm carrying this constant feeling of too much. And lately, that too much has been showing up in the form of seizures.
For six months, Bella's seizures have been predictable. They've arrived during the week of the 18th.
If you've been following our journey, Bella was diagnosed with epilepsy in 2024. After a year of trialling different combinations and doses of anti-seizure medications, she was finally seizure-free for a year. Then, in May 2026, during the week of the 18th, her seizures unfortunately returned. And they returned fast and furious in the form of tonic-clonic seizures.
For six consecutive months, these seizures have come during her sleep, in clusters. Each month, it has been like clockwork. Her Apple Watch goes off at night, and both Peter and my phone receive that unforgettable, blaring alarm. We sprint to her room. We roll her onto her side and position her safely as we watch the seizures take over her body. Her hands and feet clench so tightly that her knuckles turn white. Her head shakes uncontrollably, her eyes roll back, while her lips turn blue, and foam is coming out of the side of her mouth. We hold her gently, knowing that there is very little we can do in that moment except keep her safe, wait, and hopefully let it pass.
As I look back at each month, I can almost map out the rhythm of our lives.
The week following a seizure cluster is when we typically make another adjustment to one of her medications or introduce a new one. We muster up another round of patience and work through the week while balancing our full-time jobs and caring for Bella as she recovers. Sometimes she's too weak to return to her clinic or school, and our routines are put on hold while she regains her strength again.
The next two weeks are almost monotonous. We stay on track and stick to our schedule. We don't miss a beat with medication timing or dosages. We make sure she gets her additional vitamins and supplements. Everything is carefully logged and accounted for.
One of the biggest side effects we've been trying to navigate is Bella's lethargy. Since May, she hasn't been able to get through a full day without a nap. Her afternoon naps now last anywhere from two to three hours, sometimes even four. She wakes briefly for dinner and then heads back to bed around 6:30 pm, sleeping until 6:30 the next morning. And then, just like that, we're back to the week of the 18th.
Nobody handed us a manual to understand how the beast of epilepsy can take over our lives. To be honest, we're kind of writing our own right now. Our manual has several unfinished chapters. There's a chapter with four calendars, each logging the four medications we're balancing at various points throughout the day. There's a chapter dedicated to documenting every seizure cluster, itemizing the date, time of occurrence, time of day and duration of each seizure. There's another chapter about chasing doctors and specialists, making sure we ask the follow-up questions, follow up on the kindly requested "please share your advice and next steps," and keep track of requisition forms for prescriptions and medical tests. And then there's the final chapter. This one doesn't really have a title. It's the voice that lives in my head.
This is the open chapter that holds the faith that helps me carry all of this. Some days, that voice feels strong and steady. I can balance the weight of this beast of epilepsy and find a rhythm that works for our family. Other days, the weight feels incredibly heavy, and I'm left reminding myself that I'm doing as much as I can, and that we're doing what needs to be done. I guess that's the chapter I'm still learning how to write….
We've been trialling little adjustments to Bella's menu of medications each month, hoping that this is the month we'll finally break through the week of the 18th. Two weeks ago, as predicted, her seizures arrived on the evening of October 18th while she was sleeping. Her tonic-clonic seizures came in a cluster of four, each approximately 2-4 hours apart. It was a long evening, but eventually morning came. Considering the tough night, Bella was able to bear weight and walk around the following morning. But out of nowhere, while standing, she went into a trance and experienced another seizure. She lost consciousness, and her face hit the kitchen countertop as she fell to the floor. We rushed to her, called 911 and, before we even had a chance to process what had just happened, we were whisked away in an ambulance and eventually transferred to the paediatric department at the hospital.
Another ambulance ride. Another hospital admission. Another set of pages we weren't planning on adding to our manual.
This past week, I came across a quote on my Instagram feed. It read:
"I don't know how you do it."
"Me neither. I just don't get to not do it."
And that pretty much summed it up. There's no secret to our life right now. There's no special formula or magical way we've figured out how to manage everything. The week of the 18th continues to arrive each month, and we just do it because there isn't someone else we can hand it to. In one breath, I have to say that I'm quite proud of us for getting through it. In the next, I'm also tired of having to get through it. Both are true.
This weekend, we've started another new medication, and we're hopeful. I guess we just have to be, right? The week of the 18th has become a week of heartbreak for us over these past six months as we continue to carry the beast of epilepsy. Lately, I've been feeling both grateful and grieving. Grateful that Bella and our family has such a strong support system at her clinic, school and home, and grieving how different growing up for her is looking these days.
It's confusing, I guess, because so much of this so-called manual we're writing is invisible. There's no obvious indication of the mental load that comes with tracking every medication, watching for every change, anticipating what might happen next and constantly trying to make sense of being a parent to a medically complex youth.
We can be grateful for the people who surround us and still grieve the things that are difficult. We can be hopeful about a new medication and still be exhausted by the process of getting here. We're really hoping this new medication gives us a glimpse of hope. Knowing that Bella is trusting us to make decisions about a body that isn't ours is heavy. Being responsible for noticing everything she cannot tell me continues to scare me. I think that's one of the hardest parts of being her parents, having to interpret the things she can't communicate and make decisions based on what we believe is best for her.
So here we go again. Another medication. Another calendar entry. Another month of hoping. And when the week of the 18th arrives, we're hoping Bella is safe, healthy and seizure-free.
Fingers crossed this is the month.
