October 4, 2017
Trying to solve two problems. Both about hunger. Hunger that doesn't make any sense. And has no end.
We carried Tess for the first 5 years of her life. Because her hip issues prevented walking. It was a dark time for our heroes. Are we about to return to those days?
I’ve said before how I hate evaluations of Tess. How they make me feel, how they downplay her abilities. But recently I turned the tables on an evaluator. Mwah-hah-hah!
To keep Tess happy, we’re pretty dependent on routine. Showing her that this thing happens, then this, then this. Always always always. Until it doesn’t.
Showing our film about Tess at the rare disease film festival. What if you were in a room, an audience, full of people who get it? Then what?
Part 2 of our story about the gala. They came, they laughed, they bid on stuff, they ate, they drank, and above all, they showed the love. Big time.
We launch our foundation with a huge blowout—a gala at our house for our gal Tess. What does it mean, and how do people respond?
For episode 140, I'm doing something a little different this week. I'm sharing a talk I gave last week about our rare disease film festival. If we make a film about Tess, what will happen?
Every night since the end of May, Tess has gotten an injection, just before bed. What’s it doing to her—good things?
A lucky pattern, one that lasts only a few minutes. But it has a profound effect on Tess for the rest of the day.
At a certain point, I am unexpectedly not alone. I am irritated beyond belief, but I hold my tongue.
How does it feel to grow? To grow up? Does it make you want to scream and smash things? Or can you find ways to laugh?
A much needed pit stop. As we are crashing and burning on a long trip, there is no safe harbor. Or is there?
If you’re in the Tess Army already, it’s because you care. You know Tess personally, or you’ve joined us and been following our story. But how do we get strangers to join?
When T has a meltdown at school, she can’t learn. Takes hours sometimes to get her mojo back. And there’s one person there who we look to, to sort it out.
Growth hormone, week one. It is already making changes in our girl. Not all of these are welcome changes.
We embark on a new chapter: the era of giving growth hormone to Tess. But she has some stuff in her past that makes us nervous.
A huge bummer for Tess's greatest protector. Not even frisbee could cheer him up.
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.