The mere mention of PECS in this IEP meeting makes me feel like I'm taking crazy pills.
Read MoreBuild It Without Your No-Good Friend
Tell me what you're supposed to do with that friend. You know the one I mean. You've been friends forever, maybe since childhood. And you call yourselves friends, but the truth is this: they aren't there for you.
Read MoreMy Wife Uses Her Mom Voice at an IEP Meeting
In case you've never been in an IEP meeting, let me tell you what it feels like. It is an endurance sport, only instead of doing physical stuff, you're listening. You're listening harder than you ever have in your life.
Read MoreTess Goes to Summer Camp
Tess was headed to summer camp. But what if there was literally no one who knew her? And even worse, what if no one cared about including her?
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Florida, We Have a Problem
At this point we’re reeling. We aren’t exactly a roll-with-the-punches kind of family. If we had two typical kids, maybe we would be. But we don’t.
Read MoreTess's Hero
Not everyone thinks before they speak.
Read MoreAre You My PT?
I saw progress. With my own eyes. In a hallway and in a series of offices, on a Thursday afternoon in the town of Windham, Maine.
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The Glass Elevator
"Come on, Sara," the voice says. It's a woman, probably older, judging by the sound. It's like the way you'd speak to a small child, but there's something else underneath that.
Read MoreTess's Christmas Wish Comes True
On Christmas Day we wrestle her into a pair of tights and a dress, and she essentially gives us the finger but also kind of tolerates it.
Read MoreIgnore Me and I Will Make You Pay: Two Things We Wish We'd Known Years Ago
It woulda been so much easier if somebody told us this stuff.
Read MoreWe Say We Want Nothing, but We Are Lying
Dads are hard to shop for, and we say we don't want anything. But is that true?
Read MoreThe Toy Store Blues
Here is where the toy store becomes oppressive. Because as I browse, I find whole sections that are inappropriate. Almost tauntingly so.
Read MoreHow a Mom's Thoughtful Email Rocked Our World
Sometimes a thank you is just not quite enough.
Read MoreGetting Totally Schooled
Don't wait. Push for it now.
Read MoreLearning from the Pros at the Global Genes Summit - part 1
Holy toledo. As soon as I got to the summit, I realized I was surrounded by powerful people.
Read MoreThe Magic Sentence
Pretty much every night these days, after dinner she and I coax the kids into bed. We shake off the evening weariness, the yearning to binge-watch a delightfully mindless season of a TV show, and put on a pot of tea. And we get to work.
Read MoreAnswers
There's a new email in my inbox. "To whom it may concern," it starts off. "My name is Mike Fountain and I conduct research at Baylor College of Medicine in Houston, TX. I believe I have some answers for you and Tess."
Read MoreBones and Teeth
This week the boy broke his arm. Broke it right at the elbow, which is hard to get healed up. He's in a cast. He got some signatures on it, and then novelty wore off pretty damn quick after that.
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Not Giving Up
When you have a child with a rare disease, the unknown, the unsolvedness, gets into your bones. Finds its way into your nights and shakes you awake.
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This Isn't Over
My wife and I are a tiiiiiny bit type A. We try to be laid-back and pretend we aren't, but we totally are. We run marathons, we get up in the dark to work out, we engineer our diets for maximum performance. In her career, she constantly seeks ways to be better, to give her patients an even higher standard of care. As for me at home, I scour reading lists for the kids, scout out nifty DIY science projects, and hatch sneaky ways to stimulate growing minds. This intensity is what drove my wife and me to marry each other. Our first date was a 17-mile run, essentially on a dare. We pick the hard things. And then we do them until we succeed.
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