When you become a parent, you learn a new language—one of unspoken worries and fierce hope. With a child facing a health battle, that language evolves into a powerful form of advocacy.
Lately, that advocacy has felt like a fight.
As parents, we are the experts on our child. We know their quietest fears, their slightest flinches, and the look in their eyes that says "this is too much." For us, seeing Finley’s distress and anxiety before and after procedures is deeply painful. We know there has to be a better way for him.
When we advocate, we aren’t challenging the incredible people who provide care. We are simply bringing our unique, intimate knowledge of our son to the table. But it's profoundly frustrating when that voice feels ignored—when we explain the emotional toll on Finley and are met with a clinical response. It can feel like an invalidation of our instincts, our love, and our expertise.
Our journey with Finley's Wilms tumour is about so much more than medicine. It’s about preserving his spirit, protecting his joy, and ensuring he feels safe and heard. We are learning to translate our parental instincts into a language the medical world understands, and to keep pushing when our words don’t land the first time.
This struggle isn't just ours. It's the fight of so many parents who feel unseen and unheard in the halls of hospitals. We are all just trying to do our best for our children.
Thank you for being part of our village.