I am a gambler. But I don’t play the lottery at the grocery store or bet on sports teams, or even play the stock market. I bet on my careful scheduling, a strict adherence to a shared calendar, and the mental acuity to change direction on a dime. My wagers are my time, my thoughts, my peace of mind. Like any studied gambler, I spend time with facts: I know the parameters of my circumstances, I have an awareness of outlier effects, and I have developed a strong “sense of situation” through years of practice and modification. And like even the most practiced gambler, I’ve experienced bad results rooted in human error: a missed appointment, a lack of gauze, or, most often, my failure to anticipate one or two chaos-inducing factors. The learning curve is steep.

You’d never peg me for a gambler. I appear to be an average, middle-aged woman when I am heading into the gym with my morning hair askew and my basic workout wear. When I have made an effort at makeup, including eye shadow and lipstick, I glow as put-together but understated, mature, yet hanging onto youth with highlights. I am often seen as the professor I am (and sometimes asked if I am a librarian) when I am out sporting a scarf, cardigan, and glasses. In each of these outwardly viewed versions of me, it is impossible to discern the chaos of the early mornings, the late nights, the calendar pages obscured by continual adjustments and erasure marks. Nor is it possible to see the current that pulses below skin-depth to keep the train schedule of my life on its often delicate, bendy rails. 

My daughter Elsa, now in her late teens, has hemophilia, a rare bleeding disorder due to missing blood proteins that leads to longer, sustained bleeding. A bruise can turn to a pool of blood that requires infusion of synthetic clotting factors. Hemophilia in women, due to its X-linked nature, is incredibly rare, leading to excruciatingly long diagnostic odysseys and uphill battles for treatment. 

With any rare disease, medication management is a full-time endeavor with its own language, layers of bureaucracy and specialization, pharmaceutical manufacturers and their co-pay assistance programs for high-dollar prescriptions. Negotiation and back channeling is required when things don’t go as they should. And of course there is the most time-consuming effort of all: navigating and sometimes living in insurance company hell. 

Add to this the mountains of deadlines between work and school, operating the nonprofit my daughter and I co-founded, occasional freelance assignments, and the general management of a household, which includes everything from cleaning to grocery shopping to meal prep, atop the layers of medical appointments and medication management. How to juggle it all? By leaning into my gambler’s sense of situation using Excel and Google sheets. 

Spreadsheets are the backbones of my days and weeks; they are the “kit of parts” that allows for rapid-fire change in direction. No matter what the odds of chaos are on any given day or moment, I can look to my sheets to find the answers or to create a new solution. I need to see data in deep black and shining white; I need that contrast. Out of that blinding white nothingness, the intense blackness of words and numbers provide the shape of ballast and solution, beacon and buoy—guiding me and steadying me to calm. 

These sheets are where I track my bets: They are records of anticipated and unanticipated moments as well as potential responses. If a first blip takes place, I can easily find and track what might be the next response or action. I can add and delete and alter our course quickly, removing moments (cells) and inserting new ones to estimate my next best action, and what the results might be. Those black lines filled with notes and data allow me to see the whole board of a day or a week. I can remove myself from the intertwining messages I see and envision possibility—the scheduled breaks, the possible getaways, the planned moments of calm. 

My daughter must infuse reconstituted blood clotting medication, with my hands-on support, several times per month. We have a general idea of what days this could take place, barring an injury, which requires extra infusions. We have her medication and all the butterfly needles, gauze strips, saline flushes, and tourniquets in place at home for the needed days. The plans are in place, and the week is moving solidly along. I know my deadlines. The calendar is set. I know what to move to when, how we could slide the morning’s agenda to the afternoon, how long the wait could be for infusion help, and when we might need to take snacks. I bet on our ability to get ahold of all the people we’ll need to make quick decisions so that work and school days are not completely compromised. There is an automated, repetitive beat to these responses—like the metronome that sits atop our piano, and years of practice fall into place when adrenaline fuels the tempo.

It’s time to roll the dice. 

First blip. My daughter’s fragile veins begin to roll. It’s as if these little blue carriers of blood in her hands see the butterfly needle coming. One stick, two sticks. Take a break. Look for a new song for inspiration and distraction. Ponder: Evaluate the day now, or wait ten minutes? Have her drink more water and run in place to try to poof up her veins. 

Second blip. Stick three, and the vein is blown as soon as a drop of saline moves through the butterfly. Take another break. Ponder: Should we call her hematology nurse Kristen now or wait thirty minutes? More water and a quick walk around our building. 

Third blip. Attempt a left-handed stick of the butterfly into her right hand. My daughter commences needle-fishing to see if she can land the vein: Almost five minutes in, and no sign of blood back-wash into the butterfly’s tubing. Time to call it, and reach out to our hemophilia nurse at the children’s hospital. 

While my daughter makes the call, I begin the pack-up process: cooler, medicine, mittens to warm her hands on the way. Then I scroll through my mental checklist of the many moving parts: Did we shower yet today? What schoolwork can we bring along in case the wait is long? Does the hospital require masks? What does traffic look like, and to which hospital location will we be sent (each is at least a forty-five-minute drive)? Is there a Starbucks nearby to get a coffee after? Do I really need to take my glasses? Am I going to read while we’re there? Will the infusion nurses on duty know how to work all the levers on Elsa’s medicine, or should I take an extra dose just in case there is a fail? Should I clear my calendar for the rest of the day?

I turn to the rectangular spaces of white, filled with no-nonsense, sans-serif words aligned to the right, sometimes highlighted, and often boldly bordered. Deep breath. Hand on mouse. Exhale. Fingertips meet keyboard. Highlight, delete, type. Add, subtract, envision anew. The odds might skew against me on any given day, but the sheets allow me to see each situation clearly and with creativity. 

I am a gambler, counting every small win. I find my peace within columns and rows.