We met our goal of funding the phenotyping study. So what now?
The essential six podcast episodes, with links and everything.
THE last thing you want to do in our house if things are going well, is to mention that they are going well.
On the morning of Friday, July 13th, Tess wakes us up. She does this with a cry, as she often does, but this one is different.
We've been waiting for almost Tess's entire life to meet someone like her, to meet a family like ours. And it finally happened.
It's part of life, at least for us, that we take Tess to the doctor. A lot. She's generally a pretty healthy gal. Not many sicknesses, like coughs or colds. Just a ton of stuff that we have to figure out. Like why her hips don't work. Or why she hasn't grown an inch in about a year.
Recently Kendra left that preschool. When you leave, they do an exit interview. And one of the questions was, what has been your greatest accomplishment during your time at this preschool? Kendra had a one-word answer: She said Tess.
The mere mention of PECS in this IEP meeting makes me feel like I'm taking crazy pills.
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.
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.
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?
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.
Not everyone thinks before they speak.
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.
"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.
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.
It woulda been so much easier if somebody told us this stuff.
Dads are hard to shop for, and we say we don't want anything. But is that true?
Here is where the toy store becomes oppressive. Because as I browse, I find whole sections that are inappropriate. Almost tauntingly so.
Sometimes a thank you is just not quite enough.
Don't wait. Push for it now.
Holy toledo. As soon as I got to the summit, I realized I was surrounded by powerful people.
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.
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."
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.
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.
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.
Now that Tess is starting kindergarten this fall, something completely insane but also necessary is about to happen in our house.
In 2010, I quit my law job to be at home with my kids. Turns out our daughter Tess has disabilities. She’s different. And now so is everything else.
Tess has an ultra-rare disease. It took us years to figure out what it was.
Read about that story here.
Her disease is a mutation of a gene called USP7. Because of it, she’s nonverbal, has autism and epilepsy, and is cognitively years behind her peers.
This blog and podcast are about our journey with her.
If you’re new to the podcast, and aren’t sure where to begin, start with these six essential episodes.