Mom Behind The Label

Journey to be not "Okay at home..."

Fri, 26 Dec 2025 20:02:59 -0800

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...Read More

Ideas for Independent Living

Tue, 11 Feb 2025 16:29:36 -0800

The acronym AAC stands for Augmentative and Alternative Communication. It basically is all the things that support communication when someone cannot always rely on their speech or language skills to express themselves. Just think about it, we use forms of AAC all the time. We may not realize how much we communicate without speaking, whether it is giving a head nod when you greet someone, a thumbs up to a friend from across the room, or even using a facial expression to convey an emotion.

AAC can play many roles in early communication development. It encourages more expressive and receptive language and also decreases frustration and challenging behaviors, especially when introduced early on. In 2019, I wrote a blog post about Celebrating Her Voice sharing how Bella’s communication has evolved to using an iPad as her main form of AAC.

What I’ve learned most about supporting Bella in her journey with communication is witnessing how the iPad continues to give her access and choice. Over the past year Bella has demonstrated spontaneous requests by using her iPad to communicate with us. She is a strong visual learner, and this skill has helped her develop advocacy skills with the use of her iPad. Once she saw me eating a spoonful of peanut butter and I saw her gazing at me. She then went to her iPad, navigated to the ‘food’ folder, and then pressed the ‘peanut butter’ image. Think about that level of processing: She sees what she wants, moves to her communication device, navigates to a specific folder that has many images, and then she makes a choice to press on the button that outputs what she wants to say. She...Read More

The Beast of Epilepsy

Sun, 22 Dec 2024 19:06:37 -0800

Nighttime used to be peaceful in our home. I cannot quantify how quickly they have changed in a matter of a few months. Our nighttime is now filled with tiredness, anxiety and uncertainties.

That evening, I was the first to get to Bella.

Her cry was short, but it was loud.

I will never forget the sound of this cry as the muscles in her chest contracted and the air rushed between her vocal cords making that clear and distinct shrieking sound.

As I held her in her bed, her body stiffened and her arms and legs started jerking.

My husband and I rolled her to her side, and I held her close as she slipped away into an epileptic trance.

I cried and repeated her name, begging the seizure to stop.

As the seizure ended, another one came.

Each one came with an intensity that brought a chill to my bones.

As she was convulsing into another seizure, Petie ran out of his bedroom and all I remember was him saying “I’m scared, make it stop.”

Bella was blue, unresponsive, and seizing again.

Since September, Bella has been experiencing both tonic seizures and atypical absence seizures. Each episode has come in clusters, hitting us like a ton of bricks. In each incident there were multiple seizures ranging from 5, 15 to 21 at a time, and for each cluster we ended up in an ambulance heading to the hospital.

The Just-Right Meds

Despite a quick diagnosis of Read More

SickKids VS Mother's Day

Wed, 01 May 2024 08:41:28 -0700

Mother's Day is coming up, and as we approach this day let's take some time to recognize that this day may not be a glorious day for all the mamas out there. This day can be an emotionally charged day that can make people feel sad, lonely, or rehash painful memories.... whatever the personal reason may be. When Bella was in her primary years, I use to hate this day a lot. Of course I knew Bella wouldn’t be making me a card, or present me with dandelions picked especially for me. To be honest, for a while I use to be jealous that I'd never get to celebrate like all the other mothers do. After many years, I've learned that celebrating parenthood is a mixed bag that brings mixed reactions out of people... the good, the bad, and the ugly!

Bella is now 15 years old, and I am in a good headspace right now. How do I cope? TBH, I see this day as a moment in time where I know I am the lucky person to bring love, nurturing, and security to both my children and family. On most days at least... haha!

M-Day is just around the corner, and I wanted to take some time to recognize the strength and resilience of all the SickKids moms out there. Let's put it this way... this is an elite group of our own :) No one gets a SickKids mom like another SickKids mom!

I was recently invited to contribute to a video series where I was paired together with another mom. I had the pleasure of meeting Sumayya for the first time on set as we shared our experiences as caregivers and moms to children who've spent time at SickKids. Sumayya's son, Qais is a cancer survivor, and you can learn more about their journey, @lifeofqais. We both had to write a letter to express our shared experiences of what it is like to be a SickKids mom. Hope...Read More

Hold My Hand

Fri, 15 Mar 2024 18:07:32 -0700

It’s been a while since I’ve taken some time to write, but the last two weeks have been glorious. Eight days in Mexico, followed by a week to decompress over March Break at home. While Peter returned back to work, Bella restarting IBI therapy at the clinic, and Petie sleeping into the late afternoon, I have to say I've been enjoying my time alone! Over the past year, I can confidently say that my day to day has been full of goodness. Sure we had our scares with Bella’s seizures and her usual ups and downs with her health, but overall it's been full of life. I’m still learning that life wants me to grow, as I’m always figuring out how to let go of control, and to trust the ones around me.

I’m not sure where I’m going with this post, but I don’t want this to be a post of overcoming, achieving or meeting an end goal. I want this share to give you a glimpse of me showing up, continuously learning how to be patient, vulnerable and taking each day by stride (trying to at least!).

If you’ve been following my Instagram, last week our family took a vacation to Mexico and stayed at the beautiful Hilton Tulum Riviera Maya All-Inclusive Resort with my cousin Ros, her husband Ron and their two kids, Lielle and Eitan. This resort was recently built, and preserved as a natural sanctuary situated directly on the white sand and clear waters of a pristine and secluded bay. With some gentle nudging from Peter and Ros, we paid a bit extra for access to the Enclave Lounge with first-class food and beverages, private pool areas, in-room amenities and more!...Read More

Goodbye Kadence

Fri, 25 Aug 2023 18:37:27 -0700

Dear Kadence,

Our family’s hearts are full as we recently had to say our good-bye’s to you. I’m not sure where to begin as I write this letter, but I wanted to share our family’s story so that we are able to celebrate your life and how you have changed Bella’s life tremendously. As difficult as it is for me to write about this, I also kind of love reliving the memories we made as a family with you. So, don’t mind me, just sobbing with a smile on my face as I write this letter to you.

In 2015, you were 2 years old; graduated from the Lions Foundation of Canada, Autism Assistance Dog Guide program. As we waited for almost three years for you, we made sure that Bella was ready for you. Part of your job was to provide Bella a level of independence when she was out in the community and to also keep Bella physically safe. As you know, Bella loves to wander away and my biggest fear as a mom is losing Bella in a public space. To prepare Bella for you, my dad converted an old Radio Flyer wagon into what we called DIY-Kadence. I loved how my mom stuffed the wagon with a furry white blanket to replicate your coat! For 6 months, Bella’s educational assistants at school taught her how to walk around the school setting with DIY-Kadence to teach her how to hold the handle on your harness.

In September 2016, you and Bella entered grade 2 together. And in a blink of an eye, you became part of a school community that embraced you, as you supported Bella at recess time, physical education, DPA, school assemblies and even field trips out in the community.

Over the years you have supported Bella in many different environments. I have to admit I’ve always hated going out in public. Maybe I’ve grown to adopt some of Bella’s peeves to loud and unexpected sounds, large groups of people, and waiting in long line-ups. My...Read More

I Can, Too!

Sun, 04 Dec 2022 12:42:36 -0800

She can play, but you will have to support her.

Your child cannot be part of this activity because there isn’t an accessible pathway.

If she wants to join, she must have a quiet voice and quiet hands.

Come play, but you will have to provide your own equipment.

We don’t do that here.

These are common replies I hear from programs, community organizations and schools. I experience disability as a parent and advocate for Bella, continuously questioning why systems uphold a logic that doesn’t serve the majority of disabled children and youth. As I share just a few of my personal experiences, I have to admit that it can be exausting to see how the ideology of ‘normal’ continues to be taken as the standard. Who deserves to feel safe and valued in our communities? Who are the people that are worthy of our time? Who is the one being protected and served? I continue to have these critical conversations in the spaces I am in.

So let’s think about it… What if schools, communities, policy makers, and people in positions of power adopt an intersectional approach to understanding the experience of disability? What if the spaces we are in were designed around disability?

I was recently approached by Scholastic as they wanted to share their newly launched children’s book, I Can, Too! with me. I had the privilege of meeting the Canadian author, Karen Autio. Karen...Read More

4 Legs and a Tail

Sun, 15 May 2022 12:27:59 -0700

In 2015 we welcomed a sassy 4-legged fur ball with a wagging tail that Bella can still not resist pulling on to this day. I wrote a Letter to Kadence to share our family’s experience in our first year with her, and over the past 7 years Kadence has been by Bella’s side going to school, IBI therapy clinic, medical appointments, and even a few trips to Florida. Our family is grateful for Kadence, as she has provided a level of independence for Bella to participate in many day-to-day outings and activities in our community.

Our family is thankful for the work of the Lions Foundation of Canada Dog Guides to support the disabled community. Lions Foundation of Canada Dog Guides is a national charity and its mission is to empower Canadians with disabilities to navigate their world with confidence and independence by providing Dog Guides at no cost to them and supporting each pair in their journey together.

FACT - Each Dog Guide costs the foundation $35,000 to raise, train, and place, but they are provided at no cost to qualifying applicants. Lions Foundation of Canada Dog Guides does not receive any government funding, and relies on the generosity of Canadians to meet its mission.

FACT - All Dog Guides are professionally trained by Lions Foundation Instructors for a period of four to six months. Dog Guides are fully trained in one of the seven programs, and are then matched with their handler.

FACT - The period of formal training follows a year spent with a foster family, during which the Dog Guide puppy – or future Dog Guide – learns basic obedience and is socialized to the world around...Read More

CoMotion

Tue, 26 Apr 2022 18:33:03 -0700

This past weekend, our family was invited to the Harbourfront Centre Theatre to attend the CoMotion Festival organized by Alex Bulmer, who is a disabled Canadian playwright and theatre artist. This festival features Deaf and disabled artists in a variety of events including visual and digital art, music, performances, and panel discussions. So what’s alll this CoMotion all about? ;)

Here are some events that I’d like to highlight, and perhaps you may want to check it out for yourself… there’s still time for you to go!

When you get to the Harbourfront Centre, check out the different displays from My Words, which is a building-wide exhibition where written words and sentences appear in expected and unexpected places sharing feelings of personal reflections of what it feels like to be disabled and marginalized. This particular display throughout the Harbourfront space, not only offers guests a new way to experience art but also talk about the diversity in the disabled community.

A Crash Course in Cloudspotting is an intimate audio experience exploring the act of lying down through stories from people living with invisible disabilities and chronic illnesses, and taking a moment to experience a different view and perspective. Find a relaxing spot and bring your body to the ground to experience this unique approach horizonally.

CoMotion also offers a wide variety of interactive workshops such as...Read More

Come Freestyle with Us!

Mon, 21 Mar 2022 17:44:08 -0700

I’ve had a particular passion in accessible sport and physical activity since Bella was diagnosed with her disabilites. Navigating life while raising a disabled daughter has amplified my interest in learning about quality programming and experiences that prioritize equitable access to physical activities for Bella and our whole family. Disability is an important identity and it is great to see organizations taking the steps to view their programs, activities and services through the lens of disability.

“Initiate inclusion by invitation.” - Unknown

I don’t remember where I heard this phrase from, but it speaks volumes to me. Bella and I were recently asked to be ambassadors for The Freestyle 5K & 1K Kids Run, hosted by The Running Physio and The Canadian Running Series. Of course we jumped at this opportunity, as I’ve always believed that when organizations validate experiences of the disabled community, it also recognizes that disabled people are part of the community. Kudos to these 2 organizations for making the time to include families with disabilities, and creating an accessible space where everyone is welcome! So, what’s this freestyle race all about?

Whether you want to run, roll, skip, jump or dance across the finish line… you are welcome here! You can come solo or bring your family and friends, as this accessible route is a great opportunity for you to join our family and get active! Bella is excited to spring into Spring, and...Read More