soon & very soon i'll upload a pic or two but for now i just want to happily type away for a few minutes. i'm listening to a cd by my friend, Short, titled "listen" in french. as always, the songs are hitting me bang on in the heart. i finally have a free day after two months of travel, closing out my fellowship, saying goodbye to some of my closest friends here, and sorting through job prospects. for those intent upon my "next steps," i have no definitive words for you. guess you'll have to be still and know Who's God like i am doing :) hmm, that's about it for now. i suppose i'm not in as talkative/write-ative a mood as i suspected.
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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