One Step at a Time: Finding Hope in the Overwhelm
When our daughter who has Down syndrome turned 18, I felt completely overwhelmed. Those months were filled with Social Security questions. Paperwork. The unknown. It all felt like too much.…
Celebration Isn’t Just for the Finish Line
I’m learning, thanks to a lot of help from friends, that celebration isn’t just for the finish line. Many of us wait to celebrate until the big achievement arrives—the graduation,…
2013
Our daughter has Down syndrome. Can she live a full life?
Here's what I know... Penny has different capacities when it comes to learning, but she has no limits on her capacity to love, or to live a full life. Our…
Assumptions Without Curiosity
We just returned from two weeks in Italy as a family. It held all the things we had hoped for. We peeked into churches with some of my favorite Caravaggio…
Kids, Disability, and Relationships
Here’s what I wish parents of typically developing kids knew about disability and relationships: Disability isn’t a completely different experience. It’s often a magnified version of the human experience we all…
“You are a human. You belong here.”
I’ve been thinking a lot about belonging—what it feels like, where we find it, and how we create spaces that nurture it, spaces that say, "You are a human. You…
The Lucky Few: Finding Delight and Belonging in Disability
When Heather Avis says she’s one of “the lucky few,” she means it. In this episode, we talk about growing up with our children with Down syndrome, what it means…
Sparkle Show
Penny decided to participate in our new church’s Sparkle Show with a friend by singing along to Taylor Swift’s Fearless. It’s no small thing that she wanted to be there,…
COGNOSCENTI | For people with disabilities: Kindness is nice. Legal protections are necessary
Grateful to write today for Cognoscenti/WBUR, Boston’s NPR station (read the full essay here): President Trump's domestic policy agenda, backed by Republicans, jeopardizes protections, research and support for people with disabilities,…
Having a Disabled Child Doesn’t Doom a Marriage
I watched the viral video of Grace Clements embracing her dad, the President of Clemson University. They tumble onto the stage together and get up for a more subdued, though…
