When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture…
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My 4-year-old daughter, Cittie, recently invented a song about her dad. It’s sung to a tune that’s quite popular in children’s short videos, with the words “Daddy is a bleedy boy.” When my husband,…
My husband, Jared, is an avid eater. He’s especially fond of meaty dishes like pizza, barbecue, and steaks. He’d never pass up the chance to try a new restaurant, unique meal, or a different…
The power of music cannot be underestimated. Its universality has the ability to connect people across places and cultures. Many people also find music healing. They can find solace in lyrics and melodies that…
Pain can alter people’s behavior, causing them to act out in unusual ways. People experiencing a severe degree of pain may hurt others emotionally or physically, often without meaning to. They might say…
I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value…
First meetings are always awkward, aren’t they? Well, I have the perfect icebreaker: Did you know that my husband, Jared, has hemophilia? Most people I meet are taken aback by this. Those with…
I’ve been struggling with my mental health lately. For the past two years, I’ve been juggling two or three freelance jobs at a time while also fulfilling my roles as a mom, wife,…
Marriage is a beautiful thing. People often describe it in flowery terms — “an unbreakable promise of partnership,” “a sacred unity of two souls.” Those who possess a more worldly mindset might regard…
Dear Younger Self, Congratulations! You’ve found a person who’ll stick with you for life. What a blessing! Jared happens to have hemophilia B and a seizure disorder, and you’re going to…
It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me. “So, how’s Jared? How’s his health?” Those who ask this question are often aware…
Lately, I’ve been reading a great deal of news about Hemgenix (etranacogene dezaparvovec), a one-time gene therapy approved by the U.S. Food and Drug Administration last November for adults with hemophilia…
Have you ever seen a German playground? They’re infamous on the internet for appearing dangerous in an age of “safe” play spaces. Unlike most playgrounds we know of today, which are…
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