“Look Mom, I Can See You!” – Resilience in the Face of JRA

When I first sat down to write this post, I asked myself, “Where do I even start?” The answer seemed obvious: start at the beginning. So, I pulled out the two thick volumes of my medical records from SickKids, the pediatric hospital in Toronto, and began flipping through them, matching my memories to the facts.

It was an eye‑opener. I knew what I had lived through, but seeing it laid out in black and white was unsettling. It was a lot. For a moment, I wasn’t sure I wanted to put the weight of all this out into the world.

But as I kept reading, something surprised me. I remembered the events, some clearly, some in fragments, but I didn’t remember the pain. Not the way it must have felt. And that realization stopped me.

That’s when I understood why I needed to write this. Not just to tell my story, but to give parents of children with chronic conditions a window into what a child may carry forward and what they may not. The memories that stay, the ones that fade, and the small truths that shape us long after the medical details are gone.

How Things Looked in Those Early Years

“One of my earliest memories shouldn’t belong to a child but I didn’t know that at the time.”

Some memories arrive in flashes, a colour, a sound, a feeling you can’t quite name. Others stay whole, as if your younger self tucked them away for safekeeping. This story is one of those. It’s a glimpse into the early years of my life with Juvenile Rheumatoid Arthritis, long before I understood what any of it meant, and long before I realized how much strength a child can carry without ever calling it strength.

My Juvenile Rheumatoid Arthritis (JRA) first made itself known when I was just 18 months old. My left knee became swollen, red, hot, and painful. At that time, the standard treatment was high‑dose aspirin, and thankfully, my stomach tolerated it well.

Back then, JRA was still widely misunderstood. Treatment options were limited, research was sparse, and families often had to navigate long stretches of uncertainty on their own. There were no biologics, no early‑intervention programs, and very few specialists who truly understood childhood arthritis. Most care focused on managing inflammation and trying to preserve mobility with the tools available at the time. It was a different world, one where parents had to trust their instincts, and hope the medical system could keep up with their child’s needs.

“A child’s strength often shows up disguised as curiosity,
laughter, or the simple decision to keep going.”

Just Before the Part That Makes Me Smile

Before long, my knee developed a flexion contracture, a medical way of saying it stayed stuck in a bent position and refused to straighten, with or without help. Back then, the first line of treatment was physiotherapy and serial casting.

Let me just say: serial casting today looks nothing like it did back then.

The casting process involved the doctor manually stretching my knee into as much extension as I could tolerate. They held it there while plaster was applied from hip to ankle, essentially “freezing” my knee in that position. Plaster took ages to dry, so the whole thing was a long, painful ordeal.

I was often in tears, which of course made my mom cry too. After the first time, she wasn’t allowed in the room. Only my dad could stay, he had a gift for distracting me.  The first time this was done, I was just a little over 2 years old!

Those years of casting shaped more than my knee, they shaped the way I learned to cope. I didn’t have the language for fear or frustration, but I understood routine, and I understood the way my parents’ faces softened when they tried to be brave for me. Even then, I sensed that this wasn’t just happening to me; it was happening to all of us.

When Casting Wasn’t Enough

Unfortunately, my contracture always came back. After years of trying physiotherapy and serial casting, the decision was made to move on to surgical skeletal traction.

Two metal Steinmann pins were drilled through my tibia. Steinmann pins are solid metal rods, with sharp trocar or diamond point at one or both ends to allow controlled insertion through bone. Insertion is performed using a power drill or hand chuck, typically through a pre‑drilled hole. Removal is straightforward, pins are backed out once traction is no longer required.

The pins protruded on both sides of my leg, one just below the knee and one just above the ankle. A traction bow was attached to the pins, running up and over the end of the bed, with a weight hanging from the rope. Each day, a nurse added a little more weight, gradually pulling my leg straighter. Once it was fully extended, back into a cast it went for another week.

My how far we have come.

One morning, the pins had just been removed when my mom arrived for her daily visit. There were bloody washcloths and towels under my knee and ankle. I lifted my leg, peered through the hole left by one of the pins, and proudly said, “Look, Mom! I can see you!”  I was 4 years old.

I was just a kid trying to make her smile, trying to turn something strange into something funny. Now I understand the weight she carried but I also honour the lightness I tried to bring. Even in the hardest moments, the kid in me still wanted to be a kid.

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I share these memories not to linger in the hard parts, but to honour how far we’ve come and to show what childhood resilience can look like up close.

Families walking through Juvenile Arthritis today face the same unknowns my parents once did, and it can feel overwhelming. But please know that even in the middle of pain, appointments, and whatever fresh chaos the week brings, the kid inside still wants to be a kid. They want to laugh at something ridiculous, to play when they can, to grab onto any scrap of normal childhood that’s available. Even on those days when smiling feels like a luxury for both of you, that small, steady spark still shows up in its own way.

With time, what stands out most isn’t the medical part at all. It’s the small human moments threaded through it. I see a little girl doing her best to stay whole in a world that didn’t always feel kind, and two parents doing everything they could to steady her. That mix of innocence and resilience shaped me long before I had words for it. And if your child is walking a similar path, I hope this reminds you that even in the hardest seasons, there is still room for lightness, connection, and the small moments that become the memories they carry forward.

Children remember the joy far longer than the pain.