March 22, 2017
Christian delivers a piece of unexpected but thrilling news. News that makes us leave the conference with a new purpose--in which we're gonna need help from you.
In Houston we families have gotten to know each other, and now we get to work. A man from Memphis unveils three secrets about USP7. All of which blow our minds.
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.
Tess is getting there. In her eyes these days we can see the wheels turning.
Two big things Tess taught us this winter, about her life as a skier.
I'm learning about education. Man, it's complicated. But Tess deserves this.
A simple game on a couch. In the endless enigma of Tess's communication, we unlock a huge piece.
A small thing proves to be Tess's undoing. A small thing emblazoned with the 13th letter of the alphabet.
Bad stuff is happening at a blindingly fast rate. And I have to stand up for Tess. Because if I don't, no one else will.
We got kicked off our state's Medicaid. It wasn't our fault. And it showed me just how broken and dumb and insulting and backwards our system is.
Why isn't Tess growing? Is there anything we can do?
I've said that in genetic testing, we really ought to isolate the gene that makes me leave my wallet and keys in public places. Here's a story about a day involving that unfortunate tendency, as well as other colossal failures.
Crazy pills aside, my wife and I do a complete 180 on the best way to talk with our Tess.
We've done something--brought an event on ourselves--that causes severe TBE. I can't figure out why the TBE, until a visit from a friend makes everything clear.
An email blast from the past, a name I've not heard in a long time. And a message that demonstrates that although this job is hard, if you work with Tess, it's all worth it.
A single day in first grade. An assignment comes home in Tess's bag. It is hard for us to read it. Let me tell you what it says.
This week: it's not about leveraging our synergies or any of that corporate-speak. It's just the best darned conference call I've ever had.
This week: more fun with IEPs. And by fun, I mean frustration.
This week: what happened when Tess lost her temper recently. She didn't throw her toys, or do any of your standard tantrum things. What she did was much, much worse.
This week: make some popcorn. As Black Flag would say, we're gonna have a TV party. Tonight.
This week: what if you need a community, but there isn't one? What then?
Five years ago, Bo Bigelow quit his law job to stay home with his kids. Turns out his daughter Tess has special needs. She is almost entirely nonverbal and is only just beginning to walk at nearly age 6. She just started kindergarten, but functions at the level of a 1.5-year old. She's different. And now, so is everything else.
Follow their family's journey as they navigate Tess's relationship with her older brother, deal with school and special education, and try to solve the genetic mystery of Tess's ultra-rare disease.