A mother's journey with self-identity while navigating her two-year-old son's rare genetic epilepsy.

Amber is the mother of Superhero Rowan, living in Canada. She holds a BA from the University of Waterloo and a Paralegal Certificate from George Brown College, and is a licensed Paralegal with the Law Society of Ontario. She would do anything for Rowan and has learned so much from her brave little superhero since he was born. When she is not working or playing with Rowan, you can usually find her experimenting in the kitchen, reading, learning, going for walks, listening to a podcast, or playing a board game.

Story Transcript

Do you know what phrase really gets to me? "You are so strong." I know. It's well‑intentioned. People mean it as a compliment for navigating unimaginable circumstances. I get it.

But tell that to the pajama‑clad little girl who was pulled out of her bed in the middle of the night to be sat down at a cold, hard kitchen chair only to be yelled at for something she had done wrong earlier that day. Tell that to the same pajama‑clad little girl who was told repeatedly, "You're only crying for attention."

No. I'm crying because you pulled me out of my bed that was warm and cozy in the middle of the night just to yell at me for something I had done wrong. Read the room.

These words, “You are so strong,” have hardened me over the years, so much so that I don't cry, or I rarely do. What if someone thought I was only crying for attention?

I am so strong. Right now, I'm using this strength as I navigate being Rowan's mom. Rowan is two. He has a severe genetic disorder that causes intractable seizures and global developmental delays and a long list of other things.

SLC13A5 epilepsy. What a mouthful. What this means for Rowan is that he still has 911‑level seizures despite being on five anti‑seizure medications. He can't sit independently. He can't hold objects in his hands for more than a few seconds. He doesn't speak, and he probably never will or he might only say a few words. And he has a feeding tube. He doesn't eat anything orally.

There's a lot more, but I'm sure you get the idea.

He's also one of the happiest kids. He finds joy in everything, even those hospital visits. Now, I don't really know how you find joy in a bright, sterile hospital room, where everything smells like a Purell, but he manages.

He lights up when doctors and nurses walk into the room. He does this thing where his whole body tenses up and he gets this huge smile on his face and he lets out this gleeful shriek and his chubby cheeks get chubbier and his blue eyes light up.

I'm in awe constantly of his perseverance. He is strong. I am strong.

“You are so strong.” These words, they've become my identity. They've been said to me so many times that it's just who I am. And when you're strong, you can't break down. You can't show fear.

I hate this. Sometimes all I want to do is melt into a puddle on the floor and sob uncontrollably. But that would make you uncomfortable, wouldn't it?

When I do open up and let out all those deep thoughts that I've been thinking, and share openly about my experience with Rowan, it's usually met with some awkwardness. People don't know what to say, so they default to, “You are so strong,” and, “I don't know how you do it.” Well, you just do it and, sometimes, it really sucks.

There's no roadmap. Nothing. It isn't to say I haven't had my moments during our two, almost two‑and‑a‑half year odyssey navigating Rowan's rare disorder. There are things that certainly get to me. But, most of the time, I keep it all under lock and key and remind myself I can do hard things. This is who I am. This is who I’ve always been. I get stuff done. I do it well. I am reliable. I am strong.

I am strong when I help hold Rowan down while multiple nurses try to get an IV in his arm more than 10 times.

I am strong when I watch them drill an IO into his tibia, because they couldn't get a regular IV.

I am strong as I watch him be intubated, because his low muscle tone has impacted his ability to breathe during whatever he caught at this round of illness at daycare.

I am strong as I watch him have a 90‑minute seizure.

I am strong as I watch other children walk around and talk about how they want to go down the slide at the park.

I am strong as I watch other children eat their favorite snack.

I am strong as I wonder what Rowan’s favorite snack could be.

I am strong.

A year ago, my husband and I, Michael, we were at my sister‑in‑law's place, Kristen. We're just enjoying some family time. Rowan's cousin Connor was there and he was emitting chaotic energy, as always, in the best way. Running around, making all of the noise.

Rowan's other cousin Jackson was there, and he's older. He's a little bit less chaotic, but he is obsessed with Rowan and Michael. So, you can imagine, there's still a lot going on with him, even if he's a little lesser rambunctious than his younger brother.

Him and Michael are just crazy about Pokemon and they just chat, chat, chat about Pokemon when they're together non‑stop. It's a lot.

I barely have the energy to keep up with these boys after a long day and where I've used all of my brain power, but my heart is always a little fuller when I see how much they love Rowan. It makes every visit worth it, even if I'm tired and sometimes I just want to go home.

On this day, the house is littered with toys from playing. It's just generally more chaotic and messier, because it's a house with two young boys. Michael's mom shows up to help clean up a little bit and manage the chaos and just spend some time with the family. The house gets a little fuller as a result.

Rowan has a seizure and all sound stops. We are now in action mode. We roll him onto his side among the piles of toys and we're comforting him. We're just hoping that the seizure is short. Thankfully, it stops, but Rowan throws up. That adds to the chaos and, now, there's this lovely vomit aroma filling the air.

Rowan starts to fall asleep and we know it's time to go home. As he's draped over Michael's shoulder, he starts to have another seizure. So, we lay him down. We get out the hand sanitizer, the syringe, the midazolam, the atomizer. That familiar smell of Purell and vomit fill the air and it's our reality, and it shouldn't be. But we're used to it right now.

We administer the rescue meds and they don't work. Rowan starts to turn blue. I get down on my hands and knees in front of Rowan and I am literally scooping vomit out of his mouth just trying to clear his airway. He's not breathing.

I freeze. I slowly stand up and it feels like an eternity for my body to get from the floor to an upright position.

I put my hands up and I say, "I can't. I don't remember the first aid training. What if he dies because I can't remember the stupid first aid training? I can't help. I'm not reliable. I'm failing Rowan by not helping. I am not strong.”

Kristen steps in to help. The ambulance is taking forever to get here. Rowan is now breathing, but he's still in seizure. I just keep thinking like, “Where is this ambulance?”

I can't remember how he started breathing, but he did, and that's all that matters.

Finally, there's the ambulance. Paramedics arrive to take Rowan to the hospital.

I start to cry while Julie resumes cleaning up the chaos.

I am not strong. Who am I now?

Thank you.