anyone who knows my family or, more specifically, knows the individuals within my family will appreciate how this tableaux oozes satire. lisa and i were sitting on either side of the kitchen table with a dessert plate between us. forks in hand, we painstakingly shaved away at the treats, consuming, bite by tiny bite, chocolate cheesecake and key lime pie. dad came up to us and held up one of the books i'd intended to read. "Good Calories, Bad Calories," he chided, pointing to the cover of the book. We laughed and continued shaving away.
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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