What I’m Learning: Part Two

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As I wrote last month, I’ve been trying to read more book-length writing about medicine as I work on my own memoir of my daughter’s years of misdiagnosis and medical intervention. I’ll continue writing about the books I read on the subject, both for my own records and for the benefit of anyone looking to find inspiration for their own story, encouragement from those who understand, and knowledge to help themselves and the people they love. In some cases, these books have educated me to the brink of tears; I didn’t know, I thought more than once, learning the reasons why my daughter behaved the way she did in a range of hospital environments and states of illness and recovery.

Knowing is a huge source of security for me. Even as I’ve been recovering myself from a moderate concussion, learning more about how the brain does its healing and rebuilding is soothing. I always wanted to understand the mechanics of the diseases with which my daughter was diagnosed — how they responded to different stimuli, how they could progress, how they moved or grew. It has never been enough for me to be told “here, take this and it will help your headache;” I want to know why it will help. I want to know what the effect on my body might be and how long it might take and the reasons for this medication over another.

It is in this vein that I read the books below. How and why are my favorite questions. Continue Reading…

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I Will Miss You and I Will Miss Me

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In the autumn of 2009, when I took this photo, I was the mother of a four year old and a seven year old, walking to school hand-in-hand on both sides. My swirling girls danced in the kitchen each afternoon, fell to their soft bottoms on the hardwood floor and laughed, got up and did it again. I side-eyed the one who had yet to finish her milk and the one who distracted her, but there was so much joy every afternoon in that kitchen that I know I also joined in the dance. I worried and I danced. I leapt and I fell. The leaves outside our windows fell and fell.

“The trees are all naked!” my littlest one said, in shock, one day in late October, and I wrote it down in my list of cute-things-they-said.

We were always together, we three. Continue Reading…

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The Summer of Still-No-Book

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I set a goal in January: by June, I would have a solid crummy-first-draft of my book done. I even went to a workshop on how to create a daily writing practice; notes in my backpack, pressed daily up against my laptop, give me a roadmap and a way out of every excuse. I have the tools. I have the story.

It is August, and I do not have the solid crummy-first-draft.

I have forty-one crummy-first draft chapters, all leading up to a moment in the plot of my story when the drama comes to a full boil and holds there for six months. No matter how many times I sit down at my computer to write past it, I find myself doing other writing, working, checking Facebook, or editing previous chapters. Sometimes, I sit instead with the book proposal and churn through another chunk. Continue Reading…

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Ten Gifts I Didn’t Deserve

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In the years I’ve spent as a parent, I’ve been humbled hundreds of times. Sometimes one of my daughters has a proclivity the other lacks. Other times, the health challenges of one make me see the relative good health of the other as anything but a given. Most often, though, I am humbled by the ways I see the challenges of other children and families. The things I took for granted always, always, reveal themselves to be as symptoms of my own ignorance. I could make the list below almost endless, pages and pages of gifts that no one is guaranteed but that I — somehow, luckily — was given. I will never take them for granted again. Never. Continue Reading…

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I Was Always There

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I hate this picture.

I hate that my daughter — normally so sunny, so funny and vital and affectionate and bright — asked me to take this photo. She asked me because she wanted to keep a record of her time staying in the cardiac intensive care unit at the children’s hospital, where she was trapped after surgery to move her aorta from where it was crushing her esophagus. She asked me to take this picture — this haunting, heartbreaking picture — because I’d suggested that she keep a journal of each day, mostly so she could see herself getting better each day. I hadn’t anticipated that she’d be awake for the photos the first day. Somehow, though, she pried her eyes apart and did her best to smile, right there, as the sun was beginning to set on day one. Continue Reading…

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