Our Story

She was eight weeks old.

I put my daughter down for her nap in her bassinet and went to clean up the kitchen I was ignoring.

I was just about to put the dishes in the dishwasher but decided to go check on her.

I felt a heavy feeling in my chest when i entered the room for some reason and turned the light on.

I was looking at my baby's blueish grey face,
Not breathing.
No pulse.

Everything in me knew something was wrong before I could even think it.

I picked her up. I screamed.
Everything after that moved fast but seemed so slow at the same time.

911.

My neighbour who was a nurse entered the house after hearing the desperate screams and cries and took over the CPR.

I paced when I was standing and rocked when I was sitting.... I was just waiting for ONE thing.

CRY.....PLEASE JUST CRY!

They called it a "near" SIDS (sudden infant death syndrome).

She was resuscitated.

We were rushed to the Stollery Children’s Hospital.

And just like that, our life split into before and after.

The ICU became our world, even though I don't remember much of it.

I remember...seizures.

Machines.

Tubes.

Monitors that never stopped.

Not being able to swallow, even my own saliva.

Holding my breath, unconsciously, until the dizziness reminded me to take a breath again.

I was just waiting for someone/anyone to tell me something/anything that would change the limbo that I was in.

Days blurred into nights. Nights into weeks.

For a long time, I didn’t know if she would survive without the machines that were keeping her alive.

Every conversation felt heavy.

Every update felt uncertain.

Every decision felt like life or death.

Then came the words no parent is ready to hear.

"Severe brain damage... that would most likely result in permanent impairment of motor control, cognitive defects and blindness."

They spoke in probabilities. Outcomes. Limitations.

They told me what they didn’t expect from her.

They told me that when we took her home she would need extensive help and therapy.

All I could think was one thing....this was the BEST DAY OF MY LIFE!!

They finally said "WHEN YOU TAKE HER HOME".

I FINALLY EXHALED.

Home didn’t mean things got easier, but knowing she would survive and that we would figure it out as we went, was all I needed.

It did mean everything shifted.

Now it was appointments.
Therapies.
Specialists.
Paperwork.

Binders started stacking up.

I was trying to care for my child while also trying to understand a system I knew nothing about, let alone been prepared to navigate.

Support existed for Kalaya.

But I didn’t always know where to find it or when I needed it....and I didn't feel like it was built for me.

I sat in meetings where I didn’t know what to ask.

I nodded through conversations I didn’t fully understand.

I left appointments feeling like I had missed something important.

Not because I wasn’t trying.

Because no one had shown me how.

So I started figuring it out.

One piece at a time.

I learned how to read IPPs.
I learned how to navigate FSCD funding.
I learned which questions opened doors.
And which ones quietly closed them.

I learned how to walk into meetings and be heard.