I was telling Jess that it's been a long time since I've been a regularly appearing character in the lives of many of the people closest to me. It seems surreal to get to see a couple of my best friends twice in the same month! Donna, Aimee, and I poured out our hearts, laughed, reminisced, caught up on the past two eventful weeks, and clinked imaginary glasses with our missing fourth friend. Then, being the faithful friends that they are, Aimee and Donna accompanied me on another trip to Larry's for a boot re-fit. I love these ladies and am so blessed to call them dear, dear friends.
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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