this week has been loads of fun, visiting my brother and sister-in-law in boulder. we've trekked through snow, camped a bit, climbed a lot, and indulged in nepali food. tonight is a throwback to my days in california, however, as we await further news of the nearby boulder dome wildfire. i clearly remember seeing the smoke rising over anaheim hills, seeing ash on the cars after work, smelling the fire in the air, marveling at the eerily red sunset. tonight, we see smoke coming from the canyon behind the house and fire on Anemone. no need to worry -- mandatory evacuation has NOT reached their block (& probably won't). it's still a strange and humbling experience to watch this powerful force of nature that humans have very limited power to control.
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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