Columns

Christmas Is the Season of Family, Love, and Harmony

I know, normally we associate love with February because of Valentine’s Day and all. I even wrote a column about love in February. But isn’t Christmas also a time of love? Love for our family, our loved ones, ourselves, and life in general. Everything should slow down. During Christmas,…

A Few of Our Favorite Things

Oprah recently released her Favorite Things 2020 list, and it got me thinking of my own favorites list. What are some of the things that have made our lives a bit easier amid the struggles? Our family has made several…

My Favorite Summer Dresses

It’s getting dark earlier, and it’s cold and gray where I live. The fallen leaves have lost their shades of yellow, red, and green, and are now a mélange of brown. Mist coats the rooftops of Vienna, muting and calming the shining Christmas lights. Change is coming. I must accept…

When EB Steals Your Cat

My mom got an adorable kitten last weekend. When I showed my boys the sweet picture she texted us, Jonah questioned me about our cat that we re-homed when he was little. (Photos courtesy of Patrice Williams) “Why did we get rid of…

Say Hello to This Year’s Cover Model

This month, one of my childhood dreams came true. Ever since I was 15, I secretly wanted to be a model. But because I have scars on my body due to epidermolysis bullosa, my dream was hard to achieve. What is acceptance? I liked myself in pictures that were shot…

Interview With the Butterfly, Part 2

Last in a series. Read part one.  I continued an interview this week with my son Jonah, who is 11 and was born with junctional epidermolysis bullosa (EB), after we both got a bit long-winded the last time we sat down to chat.

On Going That Extra Mile

Living with a rare disease, all I wanted my entire life was to be “normal” and to fit in. But I’ve since changed my mind. Not only have I learned to enjoy being “different” and thriving with epidermolysis bullosa (EB), but also I think I want to be more than…

Interview With the Butterfly, Part 1

First in a series. My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and in the sixth grade. I am honored to write this column about EB, but Jonah is the one we need to hear from. Being his mom is the greatest…

Focusing on the Manna for Today

Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey with epidermolysis bullosa began. In some ways, it feels like it’s been much longer, and…