I awoke for an 8AM concall only to learn it's tomorrow. I fell back to sleep & slept 11 hours total. I ignored the trash man's doorbell. I ignored the maid knocking on my bedroom door. My new roomie, Shelli, & I had a good heart to heart after I awoke. I'm catching up on e-mails, photos (click link on right for the latest), blogging, and work. I turned the fan/light fixture washer man away because my broken toilet ran the water tank dry last night so there was no water with which to clean. I filled up the water tank to over flowing when the water came on this afternoon. now shelli & i are planning on ordering in & enjoying the rest of our cloistered existence in delhi (umm, take a look @ the pic's if you're actually worried that we're cloistered away up here).
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