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One of the most important jobs new parents have is to protect their children from pain. I am a mother of three, and every time one of my kids gets hurt, I want to take on the pain myself. When my youngest daughter, Bella, was hospitalized with neuromyelitis…

On a recent overnight trip, my family used a couple of pieces of our luggage set. My husband, Mike, reached into one of the side pockets and retrieved something that shocked him. “What’s this?!” His bewildered look told me he already knew, but he wanted my acknowledgment. I immediately recognized…

This week, my sweet girl, Sophie, has turned the big 10. I’m feeling all verklempt because they told me she couldn’t exist. But doctors are wrong sometimes, and I’m glad I trusted my gut. Twelve years ago, little information was available about neuromyelitis optica (NMO), and even less about…

In my early 20s, I decided to drop everything and travel across Europe with my close friend Phil. Our trip was memorable for many reasons, including the fact that it was in Italy when I first felt unwell. It was a hot summer, and 14 years ago, most of Europe…

In the five years since my daughter Bella, 14, was diagnosed with neuromyelitis optica (NMO), I have just barely come to accept that we may never know how or why she developed the disease. As Bella’s mom, I’ve spent countless sleepless nights filled with guilt and worry that something…

Europe is under an extreme weather alert. It’s so hot that certain trains between countries are not operational — the tracks are buckling under the extreme heat. This makes me think of climate in general and in particular how green space, plants, and gardening have positively affected my…

The phrase “fake it till you make it” is meant to encourage self-confidence. During many tough moments in my life, like learning to walk again, I’ve relied on this phrase. There are moments when I don’t feel good, but I’ll fake it and say I feel fine. Sometimes saying how…

August 2017 was a busy and exciting time for our family. My youngest daughter, Bella, and I had just spent the weekend helping my oldest daughter move into her dorm room and begin her freshman year of college; my son had just begun his freshman year of high school; Bella…

Words can hurt, especially labels. We can deny a label all we want, but terms like “disabled” will close many doors. What does it mean to be disabled, though? I find the term offensive because it implies I’m not capable, which is far from the truth. Do I live with…

Summer is one of my favorite times of the year. The days are longer, the adventures seem endless, and the smell of barbecue, flowers, and freshly cut grass fill the air. However, high temperatures during the summer, especially in tropical climates, can pose a challenge for those with neuromyelitis…