Day 10: Frostbite/nip and First Tracks

Today began as a single digit day, listening to people rag on CT in the gondola, waiting 20 min at the top of Breck's Peak 8 for first tracks, and feeling my face turn purple. It's still discolored. I'm pretty sure I got frostbite; Tim assures me it's only frostnip. What a relief!

After skiing over the remains of avalanches and painfully feeling our toes return to the land of the living, we decided to try Peak 10. Wow! The wind disappeared, the sun shone, and powder appeared. After coming out of some trees, we saw fresh tracks on a snow field and decided to make our own tracks on the next run. What was supposed to be our last run turned into four more runs of glorious powder. And for you, Lisa, I'll write, "Tim and I, we were making tracks."

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Rare Disease Day 2024

Today's Rare Disease Day. There's sometimes a particular weightiness to life with a rare disease. All the appointments, emergencies, traumas, doctors, therapists, medicines, opinions, schedules and upset schedules. My touchpoint is being mom to my precious girl with Wiedemann-Steiner Syndrome (WSS). You'd have to spend a day or week shadowing me to know what it's really like. Doesn't that sound alienating? As though you couldn't possibly imagine if you're not living it? Well, maybe. But think about a time of immense grief you've lived through, or a time when your world seemed to be falling apart around you and it felt like everyone else was completely unaffected. I suppose it's a bit like that. You might have thought that those around you couldn't possibly know how that experience felt to you. A couple weeks ago, I started keeping a list of all the extraordinary things that happened in my life due to my daughter's rare disease. I learned a c

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Year End-ish Post

I've been "keeping advent" this season in the way one might keep the Sabbath or Lent -- intentionally under scheduling, decluttering, opting out of historic holiday obligations, fasting -- and I think it's having an effect. All this advent keeping makes me long for the feasting of Christmas. I eagerly yearn for Monday when all heaven breaks loose to celebrate Christ's advent on earth. Advent keeping has also allowed me to be still and recognize patterns that have played out over the last year. 2023 has been tough. I wonder who else feels this; I know I'm alone in feeling the weight of an unpredictable world. My very body tells the tale of stress and years of inattention as I work through intense lower back pain. Vocationally I've strained toward product-market fit with Empowered Together's marketplace. I'm left longing for a co-laborer in this effort. While I remain deeply grateful for my family, I feel the pressures of parenting a child with a dis

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