Columns

There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was ... Read more

February 4, 2021February 1, 2021

Fighting for Insurance to Cover My Son’s Lifesaving Bandages

Columns, Fragile but Fierce – a Column by Patrice Williams

Jonah, my 11-year-old son who has epidermolysis bullosa (EB), is wounded from head to toe and must be covered in lifesaving bandages every single day. These bandages not only cover ... Read more

February 2, 2021January 29, 2021

By Focusing on What I Can Control, I’m Finding the Good in 2020

Columns, Girl with the Butterfly Tattoo – a Column by Lena Riedl

This year, I want to say thank you. Thank you, 2020! I know that many will think, “Why ‘thank you’? Are you crazy?” But no — I just want to ... Read more

January 21, 2021January 19, 2021

Trudging Through Difficult Days With Corneal Abrasions

Columns, Fragile but Fierce – a Column by Patrice Williams

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 ... Read more

January 7, 2021January 5, 2021

Wrestling With the ‘Why’ When My Son Is in Pain

Columns, Fragile but Fierce – a Column by Patrice Williams

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. ... Read more

December 22, 2020December 17, 2020

Christmas Is the Season of Family, Love, and Harmony

Columns, Girl with the Butterfly Tattoo – a Column by Lena Riedl

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 ... Read more

December 17, 2020December 14, 2020

In Social Situations, I’m Learning How to Stretch

Columns, Fragile but Fierce – a Column by Patrice Williams

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. ... Read more

December 3, 2020December 1, 2020

A Few of Our Favorite Things

Columns, Fragile but Fierce – a Column by Patrice Williams

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 ... Read more

December 1, 2020November 24, 2020

My Favorite Summer Dresses

Columns, Girl with the Butterfly Tattoo – a Column by Lena Riedl

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 ... Read more

November 19, 2020November 17, 2020

When EB Steals Your Cat

Columns, Fragile but Fierce – a Column by Patrice Williams

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 ... Read more