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?
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#149: No Pity Party
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!
Read More#148: Ron Burgundy or Han Solo
We switch up Halloween in an effort to honor Tess’s wishes. Of the four people in our household, how many end up happy on Halloween night?
Read More#147: I Have The Power
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.
Read More#146: Our Second-Grade Interrogator
Some relentless questioning, by an eight-year-old in Tess's class. He wants the truth. But can he handle the truth? Can we?
Read More#145: Silver Screen Bean
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?
Read More#144: Gala part 2
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.
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#143: Gala part 1
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?
Read More#142: Yes No Yes
To help our girl, last May we started a foundation. We boldly promised to cure this disease that Tess has. So where are we on that?
Read More#141: Tess Is A Punk
Tess is messing with us. For real. Do we give her a time out? Or do we just laugh?
Read More#140: Planting the Seeds
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?
Read More#139: Roller Skating
The roller rink. Perhaps Tess’s favorite place from this past summer. What happens when I bring her there?
Read More#138: On Her Own at the Elementary School
Back to school. We see the biggest smile on Tess in weeks.
Read More#137: Big Girl Tess
Every night since the end of May, Tess has gotten an injection, just before bed. What’s it doing to her—good things?
Read More#136: The Snub
A full summer of work for our foundation is punctuated by a bizarre encounter over lunch.
Read More#135: Holidays in the Sun
A lucky pattern, one that lasts only a few minutes. But it has a profound effect on Tess for the rest of the day.
Read More#134: Not Much You Can Do After Elevensies
A long ride with Tess. It’s a mystery why she’s cranky. But we manage to solve it. Twice. Sort of.
Read More#133: Who Put This Empty Cereal Box Back?
At a certain point, I am unexpectedly not alone. I am irritated beyond belief, but I hold my tongue.
Read More#132: Summer Lovin'
She’s not exactly heading to sleepaway camp anytime soon. What’s keeping the T-Bird occupied this summer?
Read More#131: Growing Up Is Hard
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?
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