thought-provoking reading

In fact, all those who know me, or think they know me from my words and silences, wonder about the same thing: about solitude erected as a screen, a wall, and also as a mirror...Is madness contagious?...If they're free to choose reason and happiness, I'm free to want neither one. My obsession: one minute before sinking into madness entirely, to shout the truth to men's faces, even if it makes them go mad. (Wiesel, A Mad Desire to Dance, 18)

As [God] more fully equips your ship to sail in storms, He will send you on longer voyages to more boisterous seas...You cannot sit down and put the victory wreath on your head. You do not have a crown. (Spurgeon, Beside Still Waters, 2)

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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.

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...

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