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Illustration by Drew Shannon
I was not even 30 yet. A young Indigenous single mother from Cowessess First Nation living in the Yukon – and I was far from home, navigating a city and a medical system I didn’t know. I felt so small. The doctors seemed focused on my daughter’s inabilities, her flaws. I felt attacked for her. Selena was a few weeks premature and a little behind development, but I never expected the diagnosis we faced.
After two weeks of tests, I sat in front of a panel of specialists. They took turns presenting their findings: Selena wouldn’t develop normally. She had Rett Syndrome. A rare neurodevelopmental disorder that primarily affects girls. There’s no cure.
It’s rare, but enough cases exist for there to be a spectrum – they determined Selena would be on the “classic,” or severe, end of the spectrum. For more information I’d need to look it up online.
After the meeting, an escort walked me back to Selena. I was exhausted with a pounding headache. Internally, I was raging. I wanted to push, punch, hit anyone that was in my way. I couldn’t get to her fast enough – I needed to hold her now! On the outside, I walked calmly as the escort led me to her.
She slept so peacefully. I picked her up, pressed my face into her hair and breathed her in deeply. I felt like I was holding my broken heart in my arms.
Back in Whitehorse, I indulged in complete denial. Selena was my Sugarplum no matter what. I didn’t believe it, I refused to! But the signs were unavoidable.
I did my research in small portions, I absorbed what I could emotionally handle. As I read, I watched it all happen in real time. The seizures. The regression was overwhelmingly rapid, her light switch was being turned off. Selena was being locked inside herself, and I couldn’t free her – so many kisses, none of them worked.
Her good days were sometimes harder than the bad ones because we saw her. We felt her spirit peek through, a glimmer of my little Selena we knew – and then she’d disappear again. Just like that, gone.
I’d cry, break, fall apart and hold myself together all in one breath. Eventually I welcomed these “Rett attacks” for their release, so I can start again and rebuild myself stronger for her each and every time.
Selena’s care is complex with symptoms of epilepsy, Parkinson’s and autism, scoliosis, gastrointestinal issues. She can’t walk or talk. She’s tube-fed and requires 24/7 care – I’ve been her caregiver every single day for over two decades.
I often hear, “I don’t know how you do it.” There’s no option, you just love harder. It’s love in its truest form. I’m incredibly lucky to be worthy of this gift – to be honoured with the most beautiful treasure.
Selena’s quiet strength speaks volumes, she communicates in her own way – with her eyes and heart – her spirit so strong and pure. Selena commands my best self and rules her world without saying a single word.
Rett Syndrome stripped her abilities, but in far more extraordinary ways, Selena is not a victim. And she is most certainly not subhuman. She is the teacher. She taught me how to connect with, use and embrace my own powers – my own voice.
My family carries Marieval and Lebret Indian Residential Schools in our history, it’s etched deep into our bloodline. It’s the reason I grew up without access to love, tenderness, to the feeling of being worthy. My family didn’t know how to give it. So, I believed I didn’t deserve it.
But Selena … she has taught me how to love myself better than anyone else could. To be proud of who I am, just as I am. That I’m not too sensitive – I’m sacred. I’m the one chosen to be her everything. This role is worth more than all the money in the world.
I also learned that joy could live beside sorrow – grief can cycle through with love and laughter just as much as it does with sadness and loss.
I carried the loss of who my daughter once was. The grief of loving someone who is still here is one of the most confusing parts of being a caregiver. But in the end, the care is more valuable than the pain. It isn’t just something you do or give – it’s the root of everything.
Rett Syndrome means a life with complex care needs and multiple disabilities, from infancy through childhood through a lifetime into adulthood.
There’s no retirement or break. Not for her.
But there’s an endless supply of love.
Every single day – love in its most powerful, purest form.
Georgette Aisaican lives in Whitehorse.
