Dana on being the person nobody asks about

"Nobody asked how I was doing for about four months. When someone finally did, I didn't have an answer ready."

Dana kept a binder. Appointment times, dosing schedules, the names of every nurse on the floor. What the binder never had a page for was her.

For four months, every conversation started with a question about her daughter. She got good at answering it. She got out of practice answering anything else.

A weekly caregiver call, found through an advocacy directory rather than a clinic handout, was the first place where the question came back around to her — and she found she didn't have an answer ready.

She helps run that call now. It opens the same way every week: not with an update, but with a check-in.

The binder had a page for everything except me.