09/03/2026
We can call their stories inspiring without pretending they aren’t also incredibly hard.
I’ve been thinking about that a lot lately. There’s a tendency, especially when we talk about children with disabilities, to reach for the beautiful parts first, such as the milestones, the resilience, the incredible families who somehow keep showing up through all of it.
And those things are real! I believe they deserve to be celebrated. But then I read what Ben’s mom sent me. She told me she cries when she has to hold her son down for bloodwork. She fights doctors for the equipment and care he deserves. Like every mom walking a similar path, she worries, has anxiety, gets overwhelmed. Sometimes she screams into a pillow.
And she wishes people would stop assuming she must be some extraordinary kind of strong simply because she is raising a child with disabilities.
Maybe in our attempt to make disability something the world celebrates, we’ve sometimes made it harder for families to say, this is hard. Without immediately needing to follow it with something beautiful. Without worrying that acknowledging the actual struggle somehow means they love their child any less. It doesn’t.
There can be beauty here and still be grief. Progress and exhaustion. Inspiration and really, really hard days... and honestly not even day(S) but both within one day. And through all of it, Ben’s mom has also had to fight against a world far too comfortable deciding what her son is capable of. He’s four. There is so much of him that the world hasn’t even met yet.
Maybe advocacy isn’t choosing the version of a family’s story that makes the rest of us most comfortable. Maybe it’s making room for all of it that everyone can find themselves in.
His name had to be Benedict.
Tonight, we welcome Ben to The Crew.
His full story and the words his mom trusted us with are now live at Jude&Jojos.
https://www.judejojosphotography.com/jjpcrew/benedict
And for the first time tonight, Ben’s Crew story was also introduced through our new email experience. If you’d like to meet future Crew members there first, you can join us here:
https://judejojos.myflodesk.com/subscribe