When my husband, Jared, and I started dating, I was aware that he has hemophilia B and epilepsy. Not long after that, someone close to me gave me a gratuitous warning about dating someone with chronic illness. They told me I would face more challenges and…
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Columns
The Roles We Play as Caregivers
Two weeks ago, my family moved back to New Mexico. Today, I find myself attempting to bring order to my office. I started matching books with the subject matter and made sure that each volume found its right place on my bookshelves. I held my Doctoral thesis in my…
I am a sucker for routine. Spontaneity does not come easily to me because I do not like surprises. I missed routine when my now 14-year-old son, Caeleb, was younger and hemophilia seemed to be the ever-present, unwanted guest in our lives. I joked that I missed boring…
Social media is one of my guilty pleasures. Whenever I find myself with free time, I open Facebook and mindlessly scroll through the endless news feed. I become immersed in whatever I stumble upon, be it funny memes, snippets of friends’ personal lives, or criticisms about society. As a graduate…
Some moments in my life are ingrained in my soul, such as the births of my sons, my wedding day, the mornings when each of my parents died, and when I heard doctors utter the word “hemophilia.” These are points along my journey that changed the trajectory of my life…
Over the past few months, my husband and I have been working extra hard on our jewelry retail business. It’s surprising how much work goes into running a small online store. My husband, Jared, thinks it’s because only two of us handle all aspects of the business, including…
Columns
Managing Chaos as a Family
If there is one word in the English language that drives me batty, it’s “chaos.” It implies a lack of control and an inability to stand on firm ground. It isn’t pleasant to be forced into a world that lacks any sense of stability. I must find a way to…
Columns
Answering the Tough Questions
As caregivers of loved ones managing chronic illness, we face questions that, when first heard, knock us to our knees. For my family, it was not so much a question as a statement. When “MacDonald the Older” was 4 years old, we set up to infuse through his port-a-cath…
Columns
Letting Go and Moving Forward
My family is preparing to move back to New Mexico. My husband’s job as a United Methodist pastor calls us to move often, so we have the moving process down to an art form. Still, it is not an easy feat. I am always in the moving mindset. Before I…
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.