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…
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I entered my 3-month-old son’s room and stared at him as he peacefully slept in his cradle. Streetlights shined through the window into the darkened room. I glanced out at a serene view that reminded me that everyone uses nighttime to rest. I turned to my baby boy, unsure of…
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…
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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…
My son Caeleb is 14 and entering high school this fall. He is at an age in which I, as a parent, do not speak on his behalf in front of him. He is old enough to share his story about his hemophilia diagnosis when he deems it appropriate. I…
Not all medical visits are created equal. Sadly, or perhaps horrifyingly, some women must fight to get access to the most basic of care, while others are fortunate enough to access it easily. While this is reality, it is not OK. It is imperative for the health of…
Life is awful from time to time. As someone with mental illness who is married to a person with hemophilia and epilepsy, I am no stranger to that thought. Various things can trigger me to ruminate on the thought that life is fickle and occasionally sadistic. It could be…
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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…
Sometimes being different is a good thing. You display your unique characteristics and qualities to the world through your clothing, hair, and makeup. Your actions reveal your views on social justice, and you voice your political views because your beliefs are a key part of who you are. Sometimes, others…
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- Love shows up to navigate hemophilia, distance, and family bonds
- We can find signs of calm in the storm if we remember to look
- New data suggest gene therapy may reach more hemophilia B patients
- How life changes when the caregiver switch flips on