Skip to main content

Day 27: Randomness

"Who we truly are and were meant to be is evidenced more by our yearnings than by our history ... God honors the earnest intent of our heart and dignifies our existence with real choices." (Gary Haugen, Just Courage, 104, 109)

"If we had foolish hopes about human culture, they are now shattered. If we thought we were building up a heaven on earth, if we looked for something that would turn the present world from a place of pilgrimage into a permanent city satisfying the soul of man, we are disillusioned, and not a moment too soon. In ordinary times only the wise realize it. Now the stupidest of us knows it." (C.S. Lewis, Learning in War-Time)

"Thy mercy seat is open still,
Here let my soul retreat
With humble hope attend Thy will,
And wait beneath Thy feet." (Anne Steele, Dear Refuge of My Weary Soul)

And amidst all the seriousness of those passages, came an evening of "Supper Bowl" and "missing Lawrence" (darn that Smartphone autocorrect!). Ahh, fun times. The top photo came from our drive to Donna's Super Bowl Party. Spot the rainbow to the right of the sun!

Comments

Post a Comment

Popular posts from this blog

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...
1 comment
Read more

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.
Post a Comment
Read more

How I Got a Blister from a Cowbell

The bullhorn sounded and he was off, swimming his heart out, across a 50m stretch of lake as deep as his arm is long. My youngest, William, competed in his third year of the  Race4Chase  triathlon in August. When we first applied, I reflected on how I hoped this triathlon camp would allow Will to do something that was entirely his. It would be an opportunity to spread his wings apart from his sister's influence. For siblings of kids living with disabilities, this kind of autonomy is life giving. Back at the lakeside, I was watching Will from a distance and ringing a cowbell like no ones business. Will ran up from the waterfront and we cheered him on. He transitioned to the bike portion and we cheered him on. When he came into view at the end of the bike and transitioned to the run, the final segment of the race, we cheered him on. All the while, that cowbell was clanging. When Will sprinted across the finish line, there was no stopping him (or the cowbell). Thinking about...
1 comment
Read more