Columns

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…

Rethink, Accept, and Appreciate Your Unique Self

I am finally back at BioNews and writing as “The Girl with the Butterfly Tattoo.” I can’t tell you how much I’ve missed writing. Due to the coronavirus and the craziness that was — well, still is — going on in the world, I had to stop writing my…

If You Are Struggling, Find Your Army

When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, when joined together, made for a monster disease that ravaged our sweet baby’s tender body.  Our first…

My Butterfly Baby

In most cases I don’t agree that “ignorance is bliss.” In general, the more information we have, the better people we are and the wiser our choices. But there are certainly some things I wish I didn’t have firsthand knowledge of. I wish I didn’t know how McDonald’s…

I’m Learning to Be Proud of My Body

“People stare at you because you look different. How do you cope with that and why are you proud of the way you look?” This is what Klara Leschanz, a makeup artist and photographer living in Vienna, asked me last month while she was taking pictures of me for…

On Loving Yourself First

What better topic could there be to write about in February than love? Before I started writing this column, I asked what topics people might be interested in reading about. A few said love and relationships for someone living with a rare condition. So, this is what I will…