‘Nothing special’ is special in a life with hemophilia in the picture
When chaos sometimes feels like the constant, stretches of stability are a boon
Life when you’re married to someone with severe hemophilia B often feels unpredictable. One moment, everything seems fine, and the next, a spontaneous bleed or unexpected health concern throws everything into chaos. Over the years, I’ve learned to stay on high alert, always ready to shift gears at a moment’s notice.
But sometimes, nothing extraordinary happens. No bleeds, no hospital visits, no medical stressors. Just routine. And I’ve come to realize that these uneventful days — the ones where life unfolds as expected — are something to be deeply grateful for.
As a self-employed person, my workdays rarely follow a set structure. I juggle multiple tasks, tracking my hours and squeezing in as much as I can. The varied nature of my work keeps me engaged, which is great for my attention-deficit/hyperactivity disorder, but it also means my schedule can be erratic. Some days are inefficiently chaotic, while others pass in a blur of productivity. So when I get the rare chance to follow a steady routine, I savor it.
Recently, I had a stretch of those peaceful, steady days. After years of planning, my husband, Jared, and I redecorated our living room to be more functional and cozy. We added a large sideboard cabinet and an accent lamp to complete the setup. These were big things for us, and making them happen felt like crossing an invisible finish line, a long-awaited step toward making our home feel more settled.
After that, we pressed pause on any further changes. Instead of diving into another project, we took the next few days to simply relax, savor the updates, and ease into a routine. Sometimes, after a long period of planning and doing, the best thing to do is just be.
Why boring is a blessing
Many people seek excitement, and I do, too. I dream of traveling to new places, experiencing unfamiliar cultures, and breaking away from routine. Both Jared and I love attending once-in-a-blue-moon events. Yet I also value stability.
When hemophilia is part of life, unpredictability becomes the norm. Unexpected bleeds, hospital visits, and treatment plans often take precedence over everything else. That’s why I cherish the days when nothing goes wrong. It’s not that I don’t welcome adventure, but there’s something deeply reassuring about ordinary days when life simply flows.
A day without a health emergency means space to breathe. It means time to focus on work, home projects, or just being present with loved ones. It’s the freedom to enjoy life’s small pleasures — decorating a room, sipping morning coffee in peace, or watching TV without worry gnawing at the back of my mind.
I know these quiet moments won’t last forever. Life will throw its curveballs, and we’ll adjust. But for now, I’m savoring the stillness, the rare and precious gift of an uneventful day.
Living with Jared’s hemophilia in the picture has taught me to appreciate the little things: the absence of pain, the comfort of a well-loved home, and the chance to enjoy the present moment without lingering anxiety about what might come next. I’ve learned that “nothing special” can be something special in itself.
So today, I’m choosing to celebrate the mundane. To acknowledge the peace that comes with predictable, uneventful days. And to hope for many more like them.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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