Columns

The Benefits of Writing a Monthly Column About EB

In the spring of 2018, I was lucky enough to meet a member of the BioNews team (the parent company of Epidermolysis Bullosa News) at the European Conference on Rare Diseases and Orphan Products in Vienna. Brad, the director of columns, asked me if I was interested in…

The Struggle of Heading Back to School

Heading back to school has always been a bit rough for my son Jonah, who lives with junctional epidermolysis bullosa (EB). Now that he is a middle schooler, things seem to become increasingly frustrating and difficult for him each year. This is partly due to his painful and abnormal life…

Learning to Embrace Uncertainty in All Aspects of Life

I am in the middle of a big change. It feels like one season of my life is ending, and a new one is slowly beginning. I’m experiencing changes in scenery, people, job, and mindset. I’m ready for something new. But these changes involve a lot of uncertainty, which is…

My Son Is Finding the Place Where He Belongs

I think middle schoolers are a bunch of weirdos. I thought this even before Jonah, my son with junctional epidermolysis bullosa (EB), was a middle schooler himself. I have a K-12 education degree and taught high school Spanish for four years before having kids. When Jonah was in elementary…

Doing Whatever It Takes to Make the Trip

I’m avoiding packing. I have a two-page packing list with three columns per page staring up at me from my kitchen counter. I feel the printed pages mocking me as I pace the floors trying to get started. We leave for the beach in 48 hours, and I’m frozen in…

What a Photo Shoot With Snakes Reminded Me About Skin

The skin is the body’s largest organ, with a total surface area of about 22 square feet. The skin protects us from microbes and the elements, helps regulate body temperature, and permits the sensations of touch, heat, and cold. In my case, my skin is “special.” I live with…

Witnessing God’s Goodness in the Suffering

Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the contents piled on the dining room table waiting for it to magically clean itself up. After three days,…

Choose Kindness When Faced With Differences

“Did a wolf attack your face?”  That’s what the preteen asked my son Jonah, who was born with junctional epidermolysis bullosa, when Jonah approached their group to play whiffle ball. It was between his brother’s Carolina Wolfpack baseball games. Jonah was…

Overcoming the Bad Days and Finding Joy

We have good days and bad days, and good weeks and bad weeks. Twelve years into our fight with epidermolysis bullosa, we’re pretty used to the ups and downs. But two weeks ago, we had one of our worst weeks ever.  It started on Tuesday…