Chapter One — Before
There was a life before any of it — ordinary mornings, small hands, the rustle of a houseful of children. I did not know to call it precious yet.
A Mother's Memoir
A mother's story,
and the after.
I'm Erin. This is where I keep what I've loved, what I've lost, and the long work of staying soft.
Chapter Two — The Diagnosis
The day the room
went quiet.
The word was rare and unwieldy: CMMRD — a form of Lynch Syndrome that turns the body's own repair against it. We already knew the word. It is what had taken my son, years before. And now we sat, again, in a small room, listening to a doctor explain what was growing inside my daughter's brain.
"We listened. We held her hand. And then we went home and learned how to keep living, one small ordinary minute at a time."
"I learned to measure days in light through her window,
not in what I crossed off a list."
— a journal entry, the long year
An interlude — and before her
And before her,
my son.
Years before, the same condition had already taken my son. Same rare inheritance, same impossible sentence — only we did not yet have the word for it. So when the doctors said CMMRD a second time, it was new and not new at all. A grief I had already been taught how to carry, asked of me again.
"I miss him on ordinary mornings. I miss him the way you miss a person who would be exactly the age he isn't."
Chapter Three — The Long Year
Treatment was a season.
Surrender was a teacher.
Brain surgeries — including an emergency craniectomy to relieve the pressure in her head. An ICU room I learned by heart. Fifty-nine days inside a hospital before she came home. A compassionate-use immunotherapy trial that gave us miracle MRIs and then took them back. I learned the geography of waiting rooms, the specific tenderness of friends who simply stayed, and the strange grace of a small body that kept choosing, for as long as it could, to stay too.
- · A rare diagnosis: CMMRD / Lynch Syndrome.
- · Multiple surgeries, an ICU, fifty-nine days inpatient.
- · A PD-1 trial — hope, and the limits of it.
Chapter Four — After
The version of me
that stayed.
My daughter left us on a Saturday in February. There is a quiet on the other side of a loss like that one no one warns you about — equal parts gift and grief. I carry her, and I carry her brother, in everything I do.
I started writing again. I started listening differently. And slowly, almost without noticing, the work I am here to do began to take shape — sitting with other people in their own long years.
From one chapter to the next
Loving them taught me one thing
grief asked me to learn well.
What we lived through became what I am here to walk others through. There is a second site — a companion space — for the people now moving through loss of their own.
Visit the Grief Support siteA second home, same hands