As you may have noticed, I took a break from blogging. I often say, "life got in the way," or, "life got busy." Just the usual like becoming pregnant, hosting many visiting friends and family, preparing for my husband's Air Force retirement, interviewing for jobs in new locations, and preparing for my sister's wedding. Maybe a bit unusual for all of this to happen all at once but someone mused yesterday that military life tends to be like this. There must be some unwritten rule that you can't move unless you're pregnant or a new parent. The truth is that military life as we know it is coming to an end. This upcoming move marks our final PCS or permanent change of station. By God's grace, we've arrived at a location we're excited about (TBA with final details and all) and trust we'll find a home that suits us. This is one of the final times I'll sit in my new favorite coffee shop, having a "me morning" to write so I thought I'd make it count (briefly). Now, off to pick up lil' Miss Miriam. :)
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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