What I’m Learning: Part One

what-ive-learned

“To the right mind, no time exists other than the present moment, and each moment is vibrant with sensation. Life or death occurs in the present moment. The experience of joy happens in the present moment. Our perception and experience of connection with something that is greater than ourselves occurs in the present moment. To our right mind, the moment of now is timeless and abundant.”
Jill Bolte Taylor, My Stroke of Insight

How does a person write about a highly-medical experience — full of trauma and technical language and crucial background information — without overwhelming the reader or, conversely, over-simplifying? This is a question I’ve been asking myself as I write the book-length story of my daughter’s misdiagnosis and path to full health. In a story that contains a fair amount of medical terminology and more than a little of my own hand-wringing, I don’t want to lose my readers to confusion or sappiness.

To that end, I’ve been trying to read other books with similar angles. These range from the stories of doctors to the stories of patients to the all-too-few stories of other parents. Some of these books haven’t been quite right, but several have given me flashes of what I need. All have taught me things about myself or, in retrospect, things about what my daughter might have experienced. I’d like to cover some of these books in blog posts here on my site, both for my own reference and for my readers who also write about medical conditions and want to see how others do it. I’ll start with two and include others in future posts. Please feel free to comment with suggestions of your own; I’m always interested in reading more. Continue Reading…

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Listen to Us

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This poem, by Shel Silverstein, always made me sad. When I was a little girl, I had an audiocassette of him reciting it, and his warm, avuncular voice is the one I hear in my head when I read it.

The Little Boy and the Old Man

by Shel Silverstein (1930-1999)

Said the little boy, “Sometimes I drop my spoon.”
Said the little old man, “I do that too.”
The little boy whispered, “I wet my pants.”
“I do that too,” laughed the little old man.
Said the little boy, “I often cry.”
The old man nodded, “So do I.”
“But worst of all,” said the boy, “it seems
Grown-ups don’t pay attention to me.”
And he felt the warmth of a wrinkled old hand.
“I know what you mean,” said the little old man.

It’s hard not to feel heard. Little children sense that they’re being ignored even if they can’t express it well. They may do other things to get the attention of grown-ups: break something, have a tantrum, or find other ways to force that grown-up to take notice. Old men may quietly do what they want, or give up entirely, but they have an understanding of who they were when they were young men — that they ignored their elders, that they paid less attention than they wished they had, and the empathy they have might lessen that feeling of sadness. These are expected responses.

But what about women? 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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Lucky Me

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This summer, my younger daughter — already the survivor of a lifetime of medical drama — was diagnosed with three distinct visual disorders. Her eyes don’t focus at the same speed, they strain easily once they’ve achieved focus, and each eye moves at a different speed when traveling across the page. Discovering these issues was yet another example of my internal voice — whispering constantly that something was not quite right — being the most truthful voice in the room. Still, despite my relief at having an answer to my daughter’s struggles with reading, something else has been nagging at me as the school year begins.

As background, it’s important to note that my life left its intended course the moment that this daughter, Sammi, my youngest, was born. Her immediately obvious state of vaguely-unwell dragged me away from my job and into the flexible world of freelance work nearly thirteen years ago. I’ve been home to walk her and her sister to school, to stay on top of doctors’ appointments, to supervise homework, to read aloud, to take her for annual vision screenings, to sit by her side in the operating room before she had sixteen different surgeries. I knew the names of her teachers, her friends, her longtime bully. I knew her daily life because I was home.

And I was home, not because I chose it, but because I am incredibly, incredibly lucky. Continue Reading…

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Make It New, Give It Life

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This last week of summer vacation, my daughters are redecorating the basement.

They are thirteen and sixteen, past needing space for a vast collection of magnetic princesses and plastic animals, the dollhouse closed up and stored beneath the stairs. The collection of pony puzzles and foam building toys and inexplicable plastic parts from birthday-party-goody-bags have been sorted, donated, stored or thrown out. Elmo and Dora the Explorer are long gone. What remains is a small enough collection of things that the basement — home to all things daughter for a dozen years — is ready to become a teenager hangout. They are planning it themselves.

Like many projects, this was supposed to be an all-summer-long plan, but here we are in the last week of summer vacation, frantically painting. I brought paint sample pamphlets from Home Depot for them, blues and reds and greens and purples and yellows. They’re the same kinds of sample cards that their father used to give them to hold while he wheeled them through the store in the oversized carts when they were very tiny, on the one day each week when he’d bundle them quickly out of the house in the early morning so I could get a few precious extra hours of sleep. They still talk about playing with the doorknobs in the store. They still remember the carts.

This week, they finally chose a light blue for the walls of their hangout. My older daughter says “It’s going to be like looking at the sky!” Continue Reading…

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