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When I Write …

It’s not what you produce as you write that’s important, it’s who you become as you write that’s important. Louise deSalvo

When I write, I become less aware of the world around me. I focus on the words on the page, emerging from my computer screen, appearing on my white narrow-ruled pad, written in the pen color of the day. Purple, deep pink, royal blue, light green, fluorescent pink … the color chosen based on my mood and how well the ink is flowing from a particular pen.

When I write, I become absorbed by the story I remember, the one I want to tell. On the days when the flow is there, I find myself back in the middle of that moment, feeling what I felt, seeing what I saw, hearing what I heard, knowing what I knew. Were we making the right decision based on the information we had at the time? Based on what I know now, mostly yes, occasionally maybe, rarely no. We did the best we could, working diligently to research all the options, uncover their long-term impact, determine the treatment’s chance of success. Writing about those days helps me remember how hard we tried, how intensely we fought, how we fiercely we loved our boy, our girl, each other.

When I write, I become grateful all over again. For Dr. Nicholson and spectacular doctors and nurses who cared for Jimmy, who cared for us, who fought alongside us and never gave up hope that they could save our sweet son. Writing helps me remember the small details I might otherwise forget. Dr. Marquez’ red eyes and the strain on her face the night Jimmy’s cancer recurred. The tears in Dr. Nicholson’s eyes the last time he saw Jimmy in clinic, only a few weeks before Jimmy died. The oncology nurse, whose name I no longer remember, who pulled me aside in the waiting room to tell me how devastated she was about the news that Jimmy’s cancer had returned. Nine months pregnant and heading out on maternity leave, she and I cried together over the unfairness.

When I write, I process the painful parts, too. The times that doctors or nurses behaved badly, something I didn’t know was possible. I’d been raised to believe that doctors were human and fallible, not godlike. My parents taught me to ask questions; to get second, third, fourth opinions; to drill down on medical pronouncements to be sure they held up under scrutiny. I didn’t know that a few physicians don’t treat children as if they were their own. That they would keep a child waiting, even though he was in pain; withhold information; make diagnoses and treatment decisions too rapidly without considering all the possibilities. That they could be lazy, nasty, arrogant, dismissive, pessimistic. That even when they apologized, they’d do it all wrong – make excuses, blame it on something or someone else, act as though they hadn’t cost us precious time or almost shortened Jimmy’s life. Thankfully, they were few and far between, and we escaped them quickly or neutralized their impact with the help of Dr. Nicholson. But to write is to remember that they exist, that they are out there, still treating other people’s children.

When I write, I remember the beauty. The notes of support, the homemade meals, the offers of help … so many offers of help. The people who appeared just when we needed them the most. The ones who knew exactly what to say and do. The ones who had no idea but showed up anyway, sitting with us in silence, witnessing our pain. Knowing they couldn’t fix anything but refusing to look away. They taught me how to show up for other people. How much saying something, anything, matters, even if the words are a jumble or all wrong. That all you hear anyway is the love underlying the words, the desire to want to make everything all right or the acknowledgement that nothing will ever be okay again. That there’s power and comfort in acknowledging how wrong and unfair life can be and how much pain eases when loving souls gather around and offer to carry bits and pieces of the grief with you.

When I write …

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