i've had plenty of REALLY good stuff to blog about lately but i'm finally getting on it tonight. i had an excellent day. it started with quality time with Abba then my first day in our office. at first, i felt like i'd traveled back in time to the days when i lived in cubicle-land. then i realized the value of daily discipline & being with co-workers for immediate feedback, strategizing, and positive peer pressure to get stuff done. for the first time in 1-1/2 years, i returned to a proper ballet class this evening! i sweated, i laughed, i LOVED it. & THEN i got to enjoy Cocoberry -- think Pinkberry in Delhi. And now i'm talking to my boyfriend, reliving the day -- life doesn't get much better than this.
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...
Comments
Becky B. ;)