08/19/2025
“The moment that drew a permanent line through your life —
the one that changed everything.”
The confusion — What is happening right now?
The diagnosis.
The words you never, ever expected to hear.
It comes out of nowhere and shatters everything you thought you knew —
about safety, about childhood, about your role as a parent.
And it reshapes who you are. Forever.
When someone says, “Don’t let your child’s diagnosis become your identity,”
you realize —
they’ve never lived this life.
Because how could it not change you?
You are the one living it.
Watching your child lie perfectly still — clearly sick, clearly hurting —
and knowing there is nothing you can do to stop the pain,
no matter how desperately you want to.
Suddenly, your days are filled with doctor visits, therapy, hospital stays, medical tests, neurosurgical consults.
And you find yourself having to live with words like:
“life-threatening,” “ticking time bomb,” “hemorrhagic stroke.”
You learn what “brain vessel disease” means.
You ask questions no parent should ever have to ask.
You are given choices no parent should ever have to make.
You speak up — even in rooms full of experts — because you have to.
You are not braver or stronger than others.
You are surviving.
You were not given a choice.
So you become the advocate.
The researcher.
The nurse.
The therapist.
The schedule-keeper.
The one who holds it all together… because there is no other option.
This life —
this pediatric brain vessel disease journey —
it changed you.
And it made you brave.
But not the kind that asks for credit.
The kind that gets up again. And again. And again.
The kind of brave your child sees — and leans on.
So let it change you.
Let it sharpen your voice.
Let it soften your heart.
Because this version of you?
It’s a warrior.
And every day you show up,
you prove that strength isn’t about perfection —
it’s about love that refuses to quit.
We See You. With All Our Heart.
Avm Alliance
