Being Your Child’s Best Advocate

Some of the hardest moments in our journey weren’t hearing bad news. They were hearing, “Everything looks normal,” when I knew something wasn’t.

The moments leading up to my daughter Evely’s epilepsy diagnosis were some of the most emotionally exhausting of my life. Evely already lives with multiple rare diseases and medical complexities, and I learned something difficult during that season: when a child already has a long medical history, it can become surprisingly easy for new concerns to be explained away or minimized.

Because Evely did not show traditional symptoms, I often found myself caught between what I was seeing and what I was being told. We went from appointment to appointment, specialist to specialist, desperately trying to understand what was happening. Each visit brought more questions, more uncertainty, and more moments where I left feeling unheard.

Along the way, I was forced to confront another painful reality: many of our systems simply were not built with families like ours in mind.

When instinct conflicts with the medical system

As her primary caregiver, I spend more time with Evely than anyone else. I care for her around the clock. I know her baseline. I know the subtle shifts in her body, her behaviors, and her expressions. I know the tiny changes that most people would never notice.

I learned that when you care for a medically complex child, your understanding of them becomes deeply rooted in observation. You begin to notice things before there are words for them. Before there are test results. Before anyone else sees it.

And that emotional weight is difficult to explain.

Knowing in your gut that you are not overreacting while simultaneously feeling like no one is hearing you or seeing what you see is exhausting. You desperately want to trust the system. You want to believe someone else can carry the weight for a moment. But when you repeatedly feel let down, hyper-vigilance quietly becomes part of your survival.

No parent wants to live there.

No mother wants to imagine she may need to fight this hard for basic care.

Parent expertise vs. clinical expertise: Building a partnership

I used to think advocacy meant pushing against doctors. I thought it meant conflict.

But somewhere in this journey, I learned that advocating for my child did not mean fighting against doctors. It meant fighting alongside my child.

I wish more medical providers understood that.

I wish more recognized that partnership requires putting ego aside and making room for the understanding that my expertise matters too. Medical professionals bring clinical expertise. Parents bring lived expertise. And when those two things work together rather than compete, children benefit.

What advocating for your child really looks like

Advocacy is exhausting because it asks us to become things we never expected to be: researchers, care coordinators, record keepers, and experts in systems we never asked to learn.

But I have also learned that advocacy does not always look like being the loudest person in the room. Sometimes it looks like asking one more question. Requesting another referral. Trusting your instincts. Refusing to stop when something still feels wrong.

I wish families did not have to become experts just to access care, but until systems change, many of us are forced to learn to advocate because our children are counting on us.