….
REFLECTION
…
It’s probably late, or it’s the middle of a hard day — and here you are anyway.
Dear Mom. Dear Dad. Dear friend born rare. If you found us today, I’m happy and sorry.
Not because you found this website. Because something happened in your life, or your child’s, that made you go looking for it.
Maybe someone noticed a patch of color on your baby’s skin. Maybe a doctor spoke words you’ve never heard before. Maybe you’re seventy years old, like me, still wondering if someone finally understands what you’ve carried all your life.
Whatever brought you here, welcome.
The relief that follows is real. The community that follows is real. The sense that someone else understands is real, and valuable, and worth protecting. — your rare companion
I wish my mother and father could have found a place like this. They did not.
…Mom died of ALS at 60, thinking she had not done enough. It was heartbreaking to watch her blink her eyes to yes and no questions, then spell out her words on an alphabet board built to give her the voice her disease had stolen.
My mom. The child raised in Germany dodging bombs and bullets, pulled from elementary school to work in a hospital kitchen, married and migrated to a strange new world, and birthed four boys in succession…
…Dad died of pancreatic cancer at 80, saying he had not done enough either. The second time a parent of mine felt the need to apologize for Mother Nature’s quirky sense of destiny.
Both of my parents did everything possible. They raised me as their oldest, treated me like my brothers. Encouraged me to live. To laugh. To love. To succeed at whatever I chose. They did this while grieving, never escaping the death of my brother, Norman.
…They gave me purpose and a life mission.
So I built this place. A place I wish someone had handed them when I was born. Life kind of owed them that.
Where do we go from here? Nowhere yet. Just come in.
We’ll walk together from here. We’ll start by talking about how we, those born rare with vascular malformations, are rare, rare within rare. How we look the same, but are unique under our first tattoo, Mother Nature’s natural tattoo. Only ours is special, is a one-off masterpiece, as I like to say.