Totally Tubular

Three days after birth, Charlie was diagnosed with tuberous sclerosis, or tubular sclerosis, as our first neonatologist called it. (Thank God for Google’s “Did you mean?” function or we’d still be scratching our heads.)
        On the list of diseases I would rather my child not have, this one would be near the top. It’s been known to mess with virtually every major organ system. Its prognosis can be horrifying/terrifying/devastating/you name it. And (see Paragraph 1) no one seems to know very much about what it is, what it does, and what the hell to do about it.
        Then we found someone who does.
        Don’t get me wrong—the Internet is my favorite invention. But it is a junkyard of bad information. And it does not compare to a real, live, human being who happens to know her shit. And who happens to agree that Charlie is the boy genius we think he is. And who also happens to think that with proper medical and developmental attention, he is going to be just fine.
        Yes, we are in for a ride. Some days it may be bumpy. Some days it may scare the bejesus out of us. But we are all buckled up. We know where we want to go. We just may have to take the road less traveled by. And if anyone knows how much all-the-difference that can make, it's Morgan and me.
        The way I see it, and the way our doctor encourages us to see it, is that it's our job to raise a kid full of personality, joy, and wonder. And that particular job will require us to shoo at a few medical annoyances from time to time. But we’ll get really good at it. Like catching flies with chopsticks.
        Long story short: Charlie has TS. But (pardon the cliché) it does not have him.
        He belongs to us.