TEC @ the Railway Exchange Building is my new office space. Arch Grants (I'm not posting the web link quite yet b/c it's under revision and looks pretty archaic at the moment) is my latest project and a team of four amazing individuals pitched in to relocate our entire office for me last night. Here are some photos so you can see the massive piles of office supplies we basically pilfered from an office that went out of business. Ok, full disclosure: we did NOT steal these supplies, we just got them for a steal. Turns out office desks can be pretty darn heavy but thankfully John and the Arch Grants' intern, Carter, were on-hand for the heavy lifting. John's turning into quite a mover after helping a Nepali family on Sunday relocate a few blocks away. So anyway, this is where I'm now spending my days. No views of the Arch but I do have a window that looks onto an old building with lions' and dogs'(?) heads attached (look closely since my computer camera doesn't zoom).
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