My roommate reminded me that I should amend the previous blog to include another event that occurred the day before the pigeon/light incident. I received call from my boyfriend, asking, "up or down?" I answered, "up," to which he replied, "good choice." I wondered what was going on; he explained that he was in my apartment, wearing my climbing harness, attaching a rope in preparation from climbing up off the balcony. The alternative was to rappel to the ground. You must understand that apartment doors in India enable one to be locked inside, unknowingly, until they attempt to leave. My roommate accidentally slid the bolt across the door and padlocked CJ inside. After many attempts to raise a raucous and get someone's attention, he decided to climb onto the roof and walk down the stairs to unlock the door by himself. Thankfully I got a call five minutes later that he survived.
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
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