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REFLECTION
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You’ve scrolled through those photos before. Late at night, maybe. Another child with the same color. Another adult with the same smile. Someone whose story feels close enough to borrow for a little while.
My parents, especially my dad, would have done exactly that if the internet had existed when I was small.
That feeling — hey, that’s me — is precious. Hold onto it. Community is one of the greatest gifts you’ll find here.
But let me gently offer something I learned much later.
Does looking the same mean being the same?
People can look remarkably alike… and still be walking very different roads. That isn’t bad news. It’s simply the beginning of asking better questions than my generation knew to ask.
This isn’t the science part of the blog yet — that comes a few notes from now. But it’s here, waiting when you’re ready. It’s the science I craved, and wished my dad could have read when I was born.
He retired, a 22-year Army Medical Corps veteran. It would have helped him make sense of me — this unpredictable, seemingly haphazard set of symptoms that never quite matched what the Army doctors described as “just a birthmark.”
“Where do you go from here?” he might ask. “Back forty-two years, the wait time it took for you to get a real name for your lifelong difficulties” might follow.
I was 42 years old; my father was 70 years old. He was only a couple of years younger than I am now. And we both heard Klippel-Trenaunay Syndrome for the first time.
This is where I take my next note. Forty-Two Years to hear a proper diagnosis. To learn that people look like me, but are not me.YZ