Three Years, and the Things We Don't Say Out Loud

Three years ago today, my daughter Rona died. She made it to six.

Anniversaries come with math you don't go looking for. This year's is this: we are halfway to the point where she will have been gone longer than she was alive.

I wasn't looking for that thought. It just showed up one day, and once it did, I couldn't stop thinking about it. Not because of what it says about Rona, but because of what it says about me.

I'm becoming someone she never knew.

I've become more protective of Rona over time, so I want to be careful here. Rona as a person belongs mostly to the people who loved her. What I can offer publicly isn't her story. It's what living without her has taught me to notice, because most of us will work alongside someone carrying grief, care for someone carrying grief, or carry it ourselves. Yet almost none of us are taught what that actually looks like after the funeral, after the casseroles, after everyone assumes life has returned to normal.

A lot has happened in three years. An unimaginable loss became work that is changing how children are cared for. Rona's FUN LAB exists because clinicians, child life specialists, researchers, advisors, and parents kept answering my emails and opening doors. Every hospital that has invited me in, every stage, every conversation that started with, "I read what you wrote," came from someone deciding this mattered. To say I am grateful is an understatement.

Her father and I have found a way to become good friends who know when and how to show up for one another on the hard days. Our family and friends have kept showing up too, not just in the first month when everyone shows up, but three years later with an iced coffee (or a Diet Coke on the days I'm really in deep) on an ordinary Wednesday.

I've realized that the people who have helped me most over the last three years almost never had the perfect words. They paid attention. They noticed when I got quieter than usual. They remembered dates I hadn't mentioned. They checked in on random Tuesdays instead of assuming the anniversary was the only day that mattered.

I've been thinking about that a lot lately because I wonder if helping people is often less about having the right answer than paying attention to what matters to them. Maybe that's true in friendship. Maybe it's true in leadership. I know it's true in healthcare.

One of the biggest misconceptions about grief is that it follows the calendar. It doesn't. Anniversaries matter, of course, but they're predictable. People remember them. They send flowers. They check in.

The days that undo you are usually the ones nobody else notices. Walking through the back-to-school aisle. Hearing the birthday song at a restaurant. Listening to someone celebrate having the house back now that the kids have gone back to school.

If you work with someone who is grieving, the hardest day is rarely the one everyone expects. It's the ordinary reminder they couldn't possibly prepare for.

Profound loss is also a brutally efficient sorting mechanism. It becomes very difficult to tolerate performative compassion after you've depended on real compassion. I find myself paying much closer attention now to the gap between what organizations say they value and what people actually experience. That's true in healthcare, in research, and honestly, everywhere.

I spend a lot less time trying to convince people who don't actually want to build something better. I have much less patience for ideas that sound compassionate than I do for people willing to do the quieter work of making things better. Once you've lived on the receiving end of a system, it's hard to stop noticing the invisible work we ask other people to carry.

The forms that don't make sense. The assumptions we don't realize we're making. The moments where a tiny adjustment could make someone feel seen instead of processed.

Three years ago, I probably wouldn't have framed it that way. Now I don't know how not to.

That doesn't mean I've figured grief out. Far from it. There are still days when a note arrives saying something I wrote changed how someone approached a family or thought about pediatric care, and I read it while sitting on my couch wondering whether I have anything useful left to offer. For a long time, I thought that distance meant I was somehow doing this wrong. I've come to think it's simply what it looks like to build something meaningful while still living inside the reason you built it.

Three years is a long time. Long enough to build an organization, change careers, and become someone I never imagined I'd have to become. When I first noticed the halfway point, I thought it was measuring the distance between Rona's life and her death.

Now I think it's measuring something else.

It's marking the distance between the person I was when she was here and the person I'm still becoming without her.

Three years ago, I thought grief would mostly change the way I remembered Rona.

I didn't realize it would change the way I see everything else.