My hope is that every child with a chronic illness, has at least one quiet hero standing just offstage. I had two. I didn’t fully grasp the weight my parents carried until I became a mother myself. Only then did I understand the courage it takes to watch your child hurt, to make decisions in the dark, and to keep showing up with steadiness when your heart is breaking.
People often tell me I’m strong. What they don’t see is the foundation that strength was built on: two parents who carried more than I ever knew, who made impossible choices look ordinary, and who taught me what resilience looks like long before I had words for it. I didn’t understand any of this as a child, but I see it now. And I see it in every parent walking this road today.
Looking back now, I see their strength everywhere. Their strength wasn’t only emotional. It showed up in the practical realities too.
The Part I Couldn’t See Then
When I look back at my early years with Juvenile Rheumatoid Arthritis (JRA), I see my parents more clearly than ever. Back then, there was no clear path forward. JRA wasn’t formally recognized in Ontario, and because of that, there’s no tidy public record showing the exact year it was finally added to the drug card. This means, initially, nothing about my care was covered by OHIP. My diagnosis didn’t just change their lives emotionally; it changed them financially. They went into debt, picked up second jobs, and worked opposite shifts so one of them could always be at the hospital with me. They carried the weight of uncertainty, while trying to build stability around a child, whose illness wasn’t even acknowledged by the system meant to protect her.
What I do know is this: change didn’t happen on its own. It happened because parents like mine refused to accept a system that overlooked their children.
They joined forces with other families, shared their stories, pushed for recognition, and fought for coverage long before advocacy had a name. When one of these groups elected my dad as president, it wasn’t because he sought the spotlight. It was because he showed up, every time, with the same steady determination he brought to everything else during those years.
Whatever year the policy finally shifted, I know the groundwork was laid by parents who were exhausted, overworked, in debt, and still unwilling to give up.
What I Remember Above Everything Else
What stays with me most, though, isn’t the advocacy or the long workdays. It’s their presence. They were always there. I have no memories of them not being there. Through every hospital stay, every flare, every appointment, every moment when the world felt too big for a little girl in pain, one of them was beside me. They stitched stability into a childhood that could have so easily felt chaotic.
Now, as a mother myself, I understand the magnitude of what they did. Their strength wasn’t loud or celebrated. It was lived. In long workdays, in hospital hallways, in community meetings, and in every decision they made to give me a chance at a full life. I understand how much intention that took. The quiet decision, over and over again, to show up no matter how exhausted, scared, or stretched thin they were.
There were no complaints, no dramatic speeches about sacrifice, no hint of the fear they must have felt. At least nowhere I could hear! They simply rearranged their lives around mine. They worked double shifts, trading off nights at the hospital, and stretching every dollar while the bills kept coming. They did what parents do when the world refuses to make room for their child: they made room themselves.
I have to hope, and truly believe, that I learned from their example. The steadiness, the quiet sacrifice, the way they showed up without fanfare or complaint. As a mother now, I understand how much of themselves they poured into those years, how many fears they swallowed so mine wouldn’t grow. And “thank you” feels impossibly small compared to the life they helped me build. But it’s what I have, and I offer it with the full weight of everything I now understand.
To any parent sitting where mine once sat. Exhausted, worried, and trying to be strong for a child who hurts. You’re carrying more than anyone sees, and you’re doing it while trying to hold your child steady. You deserve moments that refill you. A breath. A meal. A bit of rest.
I know how hard it is to make space for yourself when your child needs so much, but you cannot carry all of this if you are running on empty. Taking care of yourself is part of how you take care of them.
I want you to know this: your child won’t remember the pain the way you do. What stays with them is you. Your presence, your steadiness, your hand on their back, your voice in the dark, your quiet courage when everything feels uncertain. I don’t remember every needle or flare or sleepless night, but I remember my parents being there, always. And that is what shaped me. Your child will carry that same memory of you. Not the fear, not the procedures, but the love that held them through it all.
And if there’s one thing I can promise, from the child who lived it, to the mother who now understands it, it’s this: your presence will become their memory of safety, long after the pain has faded.
Author’s Note
If you’re new here, you might also like The Early Years, where I share more about the childhood moments that shaped this reflection.