Today was a day of complaining. It was all in good fun, of course, but brought to mind the time I "fasted" from complaining in India when it seemed there was much more about which to complain. Today, I made a list of all my boot-related complaints so I could relay them in an organized manner when I return for a second boot fitting. I also ensured Tim and Jess knew just how painfully difficult to maneuver my new skis are. But, all that aside, a beautiful day of skiing at Breck with the sun out, the wind low, a great new set of gear, with some of my fav people on the planet left nothing to truly complain about. We rounded out the day with happy hour at the Dam Brewery (flashbacks to Timmy @ Christy's circa 2006?) and bison burgers at Coleen's and Rod's. A wonderful day, indeed (no complaints there!).
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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