March 22, 2017
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?
This week: Spider-Man, Thor, Iron Man, The Hulk, Wolverine. What does Tess have in common with these Marvel heroes? And another question: what possible danger could Tess be in, when blowing bubbles?
This week: we head to the elementary school. We risk bullies and getting stared at. And we meet a new educator. Will she get it about our Tess?
This week: we fight a new battle on the IEP front. Niceness hasn't gotten it done, so we throw our toys. And one voice comes through, loud and clear, at precisely the right moment.
This week: the latest connection. More discoveries, this time from farther away than ever before, as we try to unlock the puzzle of USP7 for the T-Bird.
This week: standing in the sea, up to our necks, Tess and I meet someone who's traveled some 500 miles. And that someone does something that I really, really like.
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.