Day 8: Catching Up to Edward Sharpe and the Magnetic Zeros

What do you do with a song with the catchiest tune that's actually rather messed up if you listen to the lyrics? Tim and I were debating this yesterday. Perhaps I should warn you that if you listen to Edward Sharpe and the Magnetic Zero's song Home, you probably won't be able to get the tune out of your head.

In addition to listening to a lot of good music, I was researching child sex slavery and exploitation for an upcoming job interview. A few of the books that made my reading list include Good News About Injustice, Not for Sale, and Modern Slavery.

I also caught up with a cool group of young people beginning an inductive study of Mark. One of the verses we pondered for awhile was Mark 1:3 which quotes Isaiah 40:3, "The voice of one crying in the wilderness: 'Prepare the way of the LORD; make His paths straight.'" What does it mean to make the LORD's paths straight? Are they not straight already? Isaiah offers a little more insight by following this verse with some clues that hint paths will be made straight, valleys will be raised, and mountains laid low in order for the glory of the LORD to be revealed.

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Rare Disease Day 2024

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

Startup Day 875: piloting in New Haven

Iteration is emblematic of startups. For example: From last year's pilot , we learned that parents and adults with disabilities were looking for recommended resources. We built the Empowered Together app and tried crowd-sourcing those recommendations. In our New Haven pilot, we're bringing database building in-house by listing accessible food, arts, and recreational businesses in greater New Haven. Thankfully, we have thought partners in this endeavor at the City of New Haven and at community disability orgs. We are working with a Quinnipiac student and awaiting word on additional grant funding. We're taking the right next step in changing the social system to be accessible and inclusive of People with Disabilities.

leap for joy

Greetings from the land of Knee Shorts modest clothing, virgin margaritas, & clean flicks. Yes, I really encountered all those at the Great Salt Lake . The drive rivaled the drive to Vegas for number of praises from Mom. In my humble opinion, the drive to SLC wins, hands down. Mountains rise from clover-covered valleys, climaxing in snowy peaks. Cows & horses graze in bucolic pastures. We had a 2+ hour conference call w/ the siblings filled w/ Lisa singing Mariah Carey & Tim claiming he really was listening to everything we said. We arrived to the perfect hotel where we got to run, swim, AND bed jump. Thanks to Christine who introduced me to a bed jumping website (http://www.hotelsbycity.net/blog/bed-jump/), I had to try it. Caution: bed jumping can result in sleeping with one end of your bed on the floor OR with your suitcase holding up the mattress. By the way, Mom has declared a new gift. In addition to Master Map Reader and Spatial Arranger, she hereafter can spe

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