Columns

Ella’s Mom Goes to the Hospital

Ella’s mom, Lindsay, had a complete knee replacement on Jan. 8. She stayed in the hospital for two days before being discharged. We set her up in a pullout bed in the family room while she recovered. The first week went well: She did her exercises, iced and…

Please Stop Glorifying Being Homebound

As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight gently grace my skin, or see what the outside world has been up to for the…

Directives that Come Straight from the Angels

Our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA) on a midsummer evening in 1997. The referral to a pediatric neurologist came that morning during what was to have been his 2-month “well” checkup. Oh, the irony. Not only was our beautiful baby not well,…

Ella Works Through Life’s Frustrations

The house is full of wheelchairs, walkers, and crutches. Soon to be added will be a cane. Ella’s mom, Lindsay, had a total left knee replacement. The knee replacement was necessary because she had compensated for her right leg for many years as she battled a nasty infection…

Let 2020 Be the Year of Disability Representation

I just finished watching “The Ataxian,” a documentary from 2015 about Kyle Bryant, a bicyclist living with Friedreich’s ataxia (FA), a rare disease which shares commonalities with SMA. The film showcases a 3,000-mile bike race across the United States completed by Bryant and…

Keeping My Goals and Adapting Them to Suit My Needs

Congratulations! You have completed another rotation around the sun. Now that the holiday celebrations are over and we have resumed our normal daily schedules, let us turn our attention toward a common practice at this time of year: New Year’s resolutions. Many people choose to start a new year by…

The Humorous Interactions That Stay with Me

A few months ago, my colleague Brianna Albers wrote an excellent column about ableism in interactions with strangers. People pity those with disabilities and say things such as, “I’m so sorry for this horrible thing you have to live with.” I’ve…