Columns

‘Don’t Quit Before the Miracle Happens’

“I’m doing good, I’m on some new s**t/ Been saying ‘yes’ instead of ‘no.’” These lyrics opened Taylor Swift’s song “the 1” and her 2020 album “Folklore.” I thought them fitting to open my first column of the new year as…

Year’s End Brings a Little Bird and Memories

Our baby Jeffrey snagged his wings in early November 1997, ending the brief active-duty portion of our SMA assignment. A few short months later, my husband, Randy, and I opened a bakery and sandwich shop in one of our county’s tourist hot spots. The business bustled with out-of-towners…

The Blessings That Spark My Ambitions for the New Year

I’ve recently learned about two kinds of achievements in life. One is when you’re up a creek in a bad situation, but miraculously, things seem to resolve on their own. The second is when you have to work extremely hard to achieve your ambitions, and charge through whatever life throws…

What Will Become of Me Once I’m 23?

“Lord, what will become of me/ Once I’ve lost my novelty?” was the original lyric sung in Taylor Swift’s “Nothing New,” a bonus track she included with her recent remaster of her 2012 album, “Red.” Yet, for some reason I heard her sing,…

How to Make the Joy of Christmas Last All Year Long

As Christmas and the end of the year draw near, I’m reflecting on what 2021 has meant to me. If I look at the past year through a pessimistic lens, I could easily say, “Nothing has changed.” I’m still stuck at home because of the pandemic, and there’s still…

Not All Gifts Are Wrapped in Shiny Paper

December is replete with giving opportunities in the form of holiday presents, donations, and volunteering with myriad charitable causes, making its designation as National Giving Month apt. It’s a natural extension of Thanksgiving. Virtually anything can be a gift. Any time. *** My husband,…

The Greatest Gifts Are Filled With Love

Christmas is my favorite holiday for many reasons, and gift-giving is just one. I genuinely enjoy hunting for the perfect gift for everyone on my list. It’s one of the ways I express love, and watching family and friends open hand-selected surprises brings me as much joy as opening my…

Cherishing Togetherness During the Holidays

Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “Rudolph the Red-Nosed Reindeer.” To complete our viewing experience, my…

As an Adult With SMA, I Need Access to Evrysdi, Too

Let’s start this story about Evrysdi (risdiplam) from the beginning. About a year ago, the chronic neuropathy in my scalp that had been bothering me for three years worsened to a point of concern. It started as a mild and slightly nauseating throbbing from the back of my skull…