As promised, here are the delicious details of life post-Air Force. Our new son, William Reeves Spear, arrived April 11 -- the same day we closed on our new home at the labor and delivery wing of the hospital. Returning to CT also heralded a return to Love146 as their Special Projects Manager which has me internally innovating at one of my most favorite orgs in the world. My husband continues his military association as a SASI (pronounced sassy for Sr. Aerospace Instructor) with Jr. ROTC. The almost three year old spitfire, aka Miriam, is loving her new house with a built-in slide and all her "T-time" with her cousin. There's so much to unpack figuratively (and literally, too) related to this transition, the closing of one door and opening of many new doors, so stay tuned for more.
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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