Where's the American media when you need them to report on REAL news? SRN News -- no mention of 141 killed in a Peshawar school yesterday. NPR -- leading off with the latest gossip about the Sony leak and eventually getting around to discussing whether the Taliban leader behind the massacre is insane or not. These are real lives, real lives that will never walk the face of our earth again. These are humans, like we are humans. Where's our humanity?
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