Skip to main content

Posts

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 that mome
1 comment
Read more
Recent posts

Ezra and my thoughts

I watched the movie  Ezra  with a mom friend Sunday. In short, I commend it to you.  According to the trailer note, the film, "follows a stand-up comedian living with his father, while struggling to co-parent his autistic son Ezra with his ex-wife. When forced to confront difficult decisions about their son’s future, Max and Ezra embark on a cross-country road trip that has a transcendent impact on both their lives." If you're curious what I thought, read on and beware of spoilers. 😬 And here are the cast of characters for context: Ezra: autistic son Jenna: mom Max: dad Stan: grandpa and Max's dad This movie tackles a LOT in 100 minutes. . . Hyperbole: To tee it up properly, understand that the events in this film are over the top. If you go in expecting this kind of exaggeration, I think you'll be less flummoxed at how unbelievable it all is and can more readily see yourself and people you know in the characters. The hyperbole serves to get us thinking about the
Post a Comment
Read more

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 970: Pilot Launch

We kicked off our New Haven pilot with a press release January 29th. That garnered a bit of media attention  and interest from users across the country when Disability Scoop picked up the story. I'm trying to stay laser focused on the goals of this pilot: 1) determining the critical mass of users and businesses necessary for the marketplace to be of interest to these two sides of the marketplace 2) refining a scalable business model (in plain speak, figure out how we'll make money) Even though I'm focused on New Haven, it's gratifying and validating to hear from users across the country that they want this resource in their town, too.  The online marketplace  is open to users everywhere to recommend businesses anywhere. While we're only doing accessibility reviews in New Haven right now, I'm dreaming up how to make our accessibility reviews scalable. That'll help us reach more geographies sooner.
Post a Comment
Read more

Year End-ish Post

I've been "keeping advent" this season in the way one might keep the Sabbath or Lent -- intentionally under scheduling, decluttering, opting out of historic holiday obligations, fasting -- and I think it's having an effect. All this advent keeping makes me long for the feasting of Christmas. I eagerly yearn for Monday when all heaven breaks loose to celebrate Christ's advent on earth. Advent keeping has also allowed me to be still and recognize patterns that have played out over the last year. 2023 has been tough. I wonder who else feels this; I know I'm alone in feeling the weight of an unpredictable world. My very body tells the tale of stress and years of inattention as I work through intense lower back pain. Vocationally I've strained toward product-market fit with Empowered Together's marketplace. I'm left longing for a co-laborer in this effort. While I remain deeply grateful for my family, I feel the pressures of parenting a child with a dis
Post a Comment
Read more

post-election reflections

This fall, I ran for election to my local Board of Education. All four Democratic incumbents on our board were up for election. Our campaign began in August and continued through November 7th. By the numbers, I made 217 calls wrote 150 postcards knocked on 125 doors attended 8 community events wrote 4 Letters to the Editor won by 3 votes That last figure is what blew me away -- I will remain on our Board of Education because four people decided to get their ballots and vote. I know these folks: a friend's mom who's critically ill, wasn't planning to vote, but got fired up about issues and decided to make her (& her husband's) wishes known firefighters whom my friend's husband texted, telling them to vote for me  a guy on my husband's basketball league who said it was hard to vote for a Democrat but he did it While winning by a wide margin would've been nice, winning by a slim margin leaves me with important insights: Every vote matters and counts.  I was
Post a 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