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Wanting More Than Family Screen Time

Family movie nights are great, but it’s a challenge to think of other things we can do together now that my husband, Todd, is paralyzed from ALS. I’ve long had a love-hate relationship with screens. I once envisioned myself as a mother who would encourage creative, independent play. My…

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…

How ‘Self-care Minis’ Help Me Through a Busy Day

I’m always on the lookout for self-care strategies that help me cope and live with my ALS. Recently, I added two quick and easy skills I call “self-care minis” to my ever-growing list. They help me stay cool and calm when I have a super busy day. Why do I…

‘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…