Columns

The holiday season always seems a little strange to me, as it’s a time for family and looking forward, but also a time to look back. This holiday season, I’m acutely aware of the narrowing of our family’s faith community over the last five years. Until 2020, having a faith…

When our 5-year-old daughter, whom we lovingly refer to as “Little Star,” was born, the epidermolysis bullosa diagnosis arrived suddenly and immediately reshaped the way we imagined our life together. In a single moment, all of our certainties dissolved, replaced by a world of wound dressings, needles, creams,…

The first time I ever heard from her or saw her name was March 2, 2009. She left a comment on my blog when I was in the depths of gripping fear and the deepest sorrow. These were her words to me then, when…

I spent the last two hours at work the other day reading song lyrics, poetry, and quotes. Along with my communications team, I was attempting to brainstorm a name and tagline for the new adoption program we’re launching at our child welfare agency. I’ve also been using Google to search…

Last year, I sat down with my friend to watch our sons play football. She confided in me that she was concerned about her son continuing to play because he’d been showing symptoms that raised a red flag: slow growth, frequent injuries, and other issues that didn’t add up for…

Have you ever read “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? Here’s a short excerpt: “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard…

At 20, I welcomed my first child via cesarean section, a moment of joy that came with unexpected challenges because of my mild case of epidermolysis bullosa (EB). While my skin is sensitive and blisters easily, my EB is manageable compared with many others with the condition. Still, the…

The organization where I work is governed by a model that asks each employee to have a self-care plan. Each month, our supervisor is supposed to ask if we’ve been using it and what they can do to help ensure we do so. Honestly, I don’t even know what’s…

A year and a half ago, while scrolling through social media, I encountered a wonderful form of tattooing that I hadn’t seen or heard before. This delicate art form is known in the industry as restorative tattooing. Its mission is to restore a physical attribute to a person who’s lost…

He checks in with her and tells her he misses her when she’s gone. She tries to like sports and ask questions about the subject, just because she knows how much Jonah cares about it. She sends him photos when she’s on vacation. He regularly sends her the dumb…

Living with epidermolysis bullosa (EB) is a daily lesson in resilience. One challenge that doesn’t get enough airtime: our teeth. If you have EB, or care for someone who does, you’ve probably noticed that dental problems come with their own special brand of chaos.

It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn. Jonah, who was born with junctional epidermolysis bullosa (…