I still dance to the beat of an emergency siren
Once conditioned to respond to urgent care, I still have those instincts today
The kitchen buzzed with energy. Cookies were in the oven, a skillet of deliciousness simmered on the stove, and fresh tortillas were being rolled out on the counter. When my oldest son, Julian, and I cook together, we’re like Fred and Ginger, knowing each step and anticipating the next one. I love being in the kitchen with my son, who’s mastered the art of the tortilla. But something happened that brought our dance to a screeching halt.
My husband, Joe, walked into the kitchen to pour a glass of tea. He couldn’t find the pitcher and asked me where it was. And in that moment, my focus, which had been placed on balancing a hot tray of cookies and monitoring the skillet, was lost. I snapped at him, saying, “Just a minute. Give me a minute.”
When you’ve been together for 36 years, the occasional snap goes unnoticed. Joe knew I was in my zone and that I’d help him shortly. As I continued to quickstep and maintain my cookie rhythm, I realized how I’d spoken to my husband. It wasn’t my husband’s question that annoyed me; it was the interruption of the task at hand. It brought back some all-too-familiar memories.
Learning the instinct for emergency
When our youngest son, Caeleb, was in second grade, his life with severe hemophilia with an inhibitor was traumatic. With numerous bleeding episodes in his joints, Caeleb lost mobility and endured pain that was often uncontrollable. To ease his pain and bleeding, he was frequently admitted to the hospital for days or weeks at a time. He’d sometimes be released from the hospital only to be readmitted within less than 24 hours.
Getting his bleeding to stop was difficult. When Caeleb would tell us that his knee felt “buzzy,” my husband and I knew a bleed was starting. In those moments, the dance began.
Joe and I moved in perfect harmony. He’d call the hemophilia treatment center (HTC) to notify them of Caeleb’s bleed. We’d first try to manage it at home, so I placed blankets, drinks, and snacks at the sofa. That’s where Caeleb would recover, and Joe and I would settle in to infuse every two hours.
After everything was in place and Joe carried Caeleb to the sofa, I considered the next possible scenario.
If we couldn’t manage Caeleb’s pain at home and the HTC told us to go to the hospital, it’d need to happen quickly. In anticipation of this possibility, I’d pack Caeleb’s bag. Snacks, clothes, phone chargers, and my laptop for work were necessary items, left at the door to be gathered at a moment’s notice.
During those years, I lived in a state of constant readiness. Any interruption, even a simple question, could throw off the rhythm of survival. I became hyperfocused when Caeleb, now 19, was in crisis. Every detail mattered; every decision felt monumental.
So when Joe asked about the tea pitcher, my reaction wasn’t about him at all. It was a reflex, formed during those years when hemophilia controlled our lives.
Standing in the kitchen, I realized how quickly the past can slip into the present without warning. The urgency that once ruled our every move had relaxed, but its traces remained. My mind and body can still expect a crisis. But today there was no emergency — just cookies, tortillas, and the people I love most.
The dance in our kitchen hadn’t stopped; it’d only paused. As Julian passed me a warm tortilla, Joe poured a glass of tea, and Caeleb grabbed a few warm cookies, I stepped back into the rhythm of the moment, grateful for the enduring love of my family that keeps the dance alive.
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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