If you’ve been following Bella’s journey, you know the last year has rocked our world as we’ve been navigating The Beast of Epilepsy. In the span of twelve months, I realized something quietly unsettling: I’ve cocooned myself into being “okay at home.”
And honestly? There’s been something strangely therapeutic about it.
We’ve finally found a rhythm—a groove, even—where seizures feel less like constant curveballs and more like something we can anticipate, manage, and breathe through. With the incredible support of my parents, we were able to access a physician in the U.S. who specializes in genetics, pediatrics, and rare neurodevelopmental disorders, with deep expertise in Pitt Hopkins syndrome. Together with our neurologist in Toronto, we explored a new route of anti-seizure medication for Bella. Since spring, we can (cautiously, respectfully, and while knocking on all the wood) say she’s been more stable than she’s ever been.
Stability, it turns out, is both a gift and a trap.
With Bella doing well—and with my parents’ support—we decided to take a leap and book a family trip with my cousin and her family. A real one. Planes. Bags. A change of scenery. This might explain why I’ve been a little MIA on social media. I’ve been quietly processing the last year and a half—the highs, the lows, the whiplash—and realizing it might be time to start documenting not just Bella’s progress, but my own journey as her parent and lifelong caregiver.
If you know me well, you know I’m a creature of habit. I thrive on routine, clear expectations, and outcomes that feel at least mildly predictable. I love my job. A lot. Left unchecked, I could work 24/7—and sometimes do—because work gives me respite from caregiving and a space where I get to fully step into my skills as an educator in Health & Physical Education. I’m incredibly lucky to work in an environment where I feel valued and supported while helping students discover the joy of movement. I also rarely say no. (If you ask any of my coworkers they will confirm this immediately.)
But here’s the flip side of that pendulum: I almost never take time off for me. Days away from work are usually reserved for appointments, errands, or tackling the ever-growing to-do list at home. Rest, apparently, is something I schedule for everyone else.
And this is where my journey of being not “okay at home” begins.
It’s the part where I’m learning—slowly, imperfectly—that being a parent and caregiver to Bella also means learning how to slow down, loosen the routine, and step outside the comfort of control. It’s the part where I remind myself that I’m allowed to take up space in my own life, too.
Our family just returned from a 10-day adventure at Xcaret Mexico Hotel in the Riviera Maya—a family-friendly resort famous for its all-inclusive-meets-nature-meets-cultural-wonderland vibe. Think unlimited access and transportation to eco-parks, rivers you can float through, incredible food, and experiences tucked seamlessly into the jungle. It sounds dreamy—and it was—but let’s be clear: I boarded that plane as a full-fledged nervous wreck.
Thankfully, Peter (my steady, optimistic, opposite-in-every-way human) helped ground me, and knowing my cousin and her family were traveling with us gave me the confidence to say yes. So, we committed. And here’s what I learned in 10 days in Mexico.
Accessibility: The Mental Checklist That Never Turns Off
Accessibility is always top of mind for me. Will there be washrooms big enough for a wheelchair? Will the toilets auto-flush without warning (Bella’s personal jump scare)? Will there be background music that turns bathroom time into absolutely not time?
Plot twist: Bella had zero accidents the entire trip. Zero. She used her picture communication card to request the bathroom, navigated spacious washrooms, and survived the occasional surprise flush—with help from my award-worthy rendition of Old MacDonald as a distraction. Parenting hack unlocked.
The kindness we encountered also surprised me in the best way. One afternoon, my niece, Bella, and I took a local boat ride. No ramp. Just a small boat and a big moment of uncertainty. The boat driver, who spoke only Spanish, used gestures and limited English to ask how he could help—and then gently lifted Bella into the boat and checked in on us the entire ride. When we docked, a total stranger waiting in line stepped in without hesitation to help buckle Bella safely back into her wheelchair.
That moment stays with me. Sometimes, when spaces aren’t accessible, people make them accessible.
Food: No One Saw It Coming
Bella and food can be…predictable. Fried rice is her go-to. Always.
Until Mexico.
Turns out she loves made-to-order penne with meat sauce, bacon with breakfast, freshly squeezed orange juice, and—her newfound passion—orange Fanta. On day one, she spotted Petie and her cousin Eitan drinking it, grabbed the cup straight out of their hands, and chugged it like she’d been waiting her whole life for that moment.
Pool side tacos and a burger with fries and guacamole ain't bad either! Bold. Confident. Iconic.
Sleep: The Tent That Became a Family Favourite
Sleeping in a new place is always anxiety-inducing. At home, Bella sleeps in a custom bed—basically an adult-sized crib. For the trip, we brought a pop-up tent, dismantled the queen bed in our room, put the mattress on the floor, and built Bella her own little sleep sanctuary. (I’m sure housekeeping had questions). Within two days, she was sleeping peacefully. We set up a camera, brought her Apple watch for seizure alerts, and felt confident enough to exhale. Also worth noting: the tent wasn’t just for Bella. On early mornings, Petie quietly crawled in for extra sleep. Honestly, I get it.
Meds, Schedules, and Learning to Bend (Just a Little)
Bella is currently on three medications, all on a strict schedule that pretty much dictates our day. We brought everything—daily meds, rescue meds—and stayed on track. But what surprised me most was Bella’s flexibility. My cousin thoughtfully booked dinners around Bella’s usual mealtime, and we were able to sit together as a family of eight. Were these dinners easy? Absolutely not. We brought the full bag of tricks to keep Bella entertained. But they were worth it. They were moments of normalcy—laughing, eating, being together. Those moments matter.
Xel-Há: Where Bella Outlasted Everyone
The highlight of the trip—for me—was our day at Xel-Há, a breathtaking natural inlet filled with marine life and rich cultural history. The kids complained endlessly: the water was cold, salty, and unpredictable. Bella stepped in and said, “I live here now.” She outlasted everyone.
We spent over two hours in open water with fish swimming all around us, Bella kicking happily the entire time. I had fully prepared myself to leave the park early, assuming it would be too much. Instead, she got more out of that day than anyone else. Kids are incredible that way… well she was that day! Haha!
Note on Petie (Because He Deserves It)
While I talk a lot about Bella, I need to pause and brag about Petie. Grade 8 has brought out his independence in ways that stop me in my tracks. He knows how to advocate for himself, ask for what he needs, and confidently exist in the world. During the trip, Peter and I were often with Bella while Petie explored with his cousins—or on his own. He slept in, found an open buffet, claimed tables, and reserved seats like a seasoned resort pro. I’m so proud of the young person he’s becoming (despite his attempt to get himself and his cousin beer). He also thoroughly enjoyed milkshakes, strawberry daiquiris, the jaguar signature drink, ice cream, candy, and basically anything fried or the colour brown. Balance I guess...
Letting Go (Just a Little)
As I wrap this up, I want to be honest: asking for help is still hard for me. I don’t know why I feel like I have to do everything myself, in my own way, on my own timeline—but I do.
This trip taught me trust.
Trusting my husband to push me outside my comfort zone. Trusting that I am supported—especially by my cousin Ros and her husband Ron. Because of them, I could finish a meal, walk hands-free, go down a water slide, zip-line, and even enjoy the beach.
My journey to being not “okay at home” is still very much a work in progress. Routine will always call me back. But right now, I’m sitting with memories that couldn’t have been made without love, support, and a whole lot of courage.
And for that, I am endlessly grateful. 💛
