Columns

Spring Break With ALS Comes With Sacrifice and Love

I think a lot about how a parent’s ALS affects kids. Recently, an online friend lost her husband to ALS. She has small children and has been posting about their grief and the tender questions her kids have asked. It’s difficult enough for an adult to process the pain of…

‘Why Didn’t You Tell Me I Was Happy?’

After my husband, Todd, was diagnosed with ALS, we thought he would have at most five years to live. We started with only two major goals: take a family vacation together with our toddler and preschooler, and build an accessible home. We did both of those things within the…

Life Imitating Art Imitating Life

“They’re gonna put me in the movies, They’re gonna make a big star out of me, … And all I gotta do is act naturally.” — Johnny Russell Two weeks ago, I referenced several catchphrases from…

Discovering the World Is Broken

“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot. I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time…

I’m Craving a Measured Change of Seasons

“When she walks, she’s like a samba, That swings so cool and sways so gently, That when she passes, Each one she passes goes, ‘Ah.'” One day last month, if the “tall and tan and young and lovely” striking presence…