So after an evening of moonlit climbing and good food and good friend and good wine (with an unpleasant window breaking incident to remind us we're living in this crazy country), i've returned to liking india and even hyderabad. and as if yesterday wasn't enough, a good time was had by all this afternoon at snow world, an indoor chilled oasis that celebrates the white stuff. we inaugurated a new "run" on the sledding "hill" and got pulled into the bhangra dance circle and got pelted repeatedly by snowballs and let snow fall on us from the snow blowers and tried making tracks while riding the sled carnival ride. oh, & the best part was the gear everyone wore -- sweet red polyester mittens & jackets, army green socks that bunched in the wrong places, and red rubber boots. oh, we can't wait to enjoy the REAL white stuff!
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
Comments