In the hustle and bustle of daily life, we often overlook the extraordinary within the ordinary. My husband, Jared, has hemophilia, and we’ve found that living with the bleeding disorder has a way of sprinkling our lives with one-of-a-kind situations that might seem mundane to us but are…
Columns
My oldest son, Julian, is preparing for a big audition. He hopes the casting director will hear his submission and ask him to go to New York for a final, on-site callback. If the powers that be select him, he’ll perform in his first national touring production. My son displayed…
Imagine a bank account. When depositing money, the ideal is to have enough to cover expenses, bills, and some fun things. But when the withdrawals amount to more than the available money, there’s a crisis. At that point, using credit cards or applying for impossible-to-pay-back loans may become necessary. The…
My husband, Jared, carries his hemophilia well. At first glance, he appears healthy, with a solid physique, and he actively engages in sports. The keloid scars running down his arms contribute to his rugged charm. Some might dub him a model hemophilia patient, an example to follow. During…
About a month ago, my world was turned upside down when my kneecap dislocated while I was simply shifting my leg on a recliner. This unexpected incident brought back memories of my teenage years, when I underwent two surgeries to keep my kneecap in place. To add complexity to…
Over the next few weeks, I’m taking a short sabbatical. I realized I needed time to regroup, rest, and renew my spirit. Little triggers that crept into my brain warned me I needed to care for myself. Failure to adhere to these warning signs often leaves me angry,…
What does your pain feel like? Is it burning, sharp, pulling, shooting, or achy? Describing pain is difficult. In fact, many words used to describe pain are metaphors or similes: It’s like being stabbed by a knife or burned by a hot stove, for example. Yet a lot of people…
As a “HemoWife,” I’ve had the privilege of connecting with numerous people in the hemophilia community. While our shared experiences allow us to create a strong bond, one important topic often remains unspoken: the social and mental maladjustment that some people with hemophilia may face due to…
Welcome to my world, where it seems like I’m perpetually hosting a pity party. The past year has thrown more curveballs my way than I’d ever anticipated, leaving me caught in a never-ending hurricane of challenges. While I’m sharing my struggles here, I’m also keeping in mind the resilience of…
After writing a weekly column for over six years, I needed the break I’ve just completed. I’ve spent the past few months working to renew my spirit and consider what’s essential. I didn’t realize how desperately I needed to let go of some things. While my recent sabbatical is technically…
Recent Posts
- Bleeding.org LIVE! turns the spotlight our way, but being seen is the first step
- I choose to share the power of my story with my blood brothers and sisters
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed