No, this is not the juicy gossip session you may have hoped for, given the title of the posting. HOWEVER, let me tell you how much I love and hate my phone service, Airtel. I picked up my landline phone this evening, expecting, once again, a miscommunication with some Airtel Sales Rep on the other end who would continually say, "Hello? Good evening. Hello? Good evening," after I already responded. Instead, I was greeted by calming music and a pre-recorded message that offered me the option of ordering daily devotionals on my phone. No, I don't want daily devotional calls but the change of tone was appreciated.
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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