Dear Maria,

I don’t how you did it. How you didn’t let the anxiety and doubt consume you. Maybe it did and you loved us so much that you tried to protect us from it.

I can’t help but think that life betrayed you. That your own body betrayed you.

It’s been years since I saw you face it, and still the deep-seated anxiety sits just below the surface. What if life and my body betray me? What about my girls - will their bodies betray them?

The fear that came with a rare disease diagnosis was never separate from any grief I felt. They co-existed, feeding off each other.

You were one in 5 million. That rarity combined with a disease that has so few distinguishing symptoms that it’s virtually undetectable and seeing you be affected by it made the world unsafe. Now, there is no symptom that I don’t see, no spot that goes unnoticed, no bump that isn’t monitored, no variation that isn’t noted.

I have felt the panic, the dread, the fear. And I’ve been fortunate enough to feel the relief of learning it wasn’t anything serious.

You must have been out of your mind scared. You must have felt it eat you from the inside out.

I’m sorry I didn’t know how to be there for you. How to support you. How to feed your resilience. I’m sorry you had to be alone in that fear.

I don’t know how you did it. And I’m so proud of your courage.

Jess