Columns

In another bummer turn of events, my 11-year-old son Jonah woke up on Sunday morning with a corneal abrasion. These, and the types of blisters he experienced on Christmas, are two of the most painful things he endures. He hasn’t dealt with an eye…

Our Christmas started out like most people’s. Well, sort of. We, like many, kept it small this year. On Christmas Eve, we did bath and bandage change in the afternoon. It never really feels like a holiday can begin until that is out of the way. That night,…

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,…

I am an extrovert by nature. Most of my life I have gotten my energy from being around other people. I value others’ opinions, points of view, camaraderie, and comfort. I love to laugh and have always been up for a good game night.

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…

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…

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…

Last in a series. Read part one. After our son Jonah was born with junctional epidermolysis bullosa, we made the difficult decision for him to get a gastrostomy feeding tube. Once it was decided, things went into motion pretty quickly. To…

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…

First in a two-part series. Our son Jonah, who was born with junctional epidermolysis bullosa in 2009, struggled to eat from the beginning. It was one of the main reasons he had to remain in the NICU after he was born. Jonah finally ate…

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.

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…