I took my first auto rickshaw ride in Delhi this evening to arrive at the internet cafe. After a tour down the road, around the barricade, past the police department, by the hotels, into two off-line internet cafes, our group of 15 or so Americans arrived. One of my fellow Fellows is haggling with the internet cafe proprietor sitting behind me, who's reading over my shoulder and asking for a copy of my license for his records. Hmm . . . We enjoyed an afternoon of Bollywood dance instruction and will have a group performance at the end. It felt good to laugh at ourselves looking ridiculous. Off to supper now.
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