Let Me Take You There

doorA hundred lifetimes ago, in undergraduate and graduate writing workshops, I studied the ways that tense and perspective change the tone of a story. When it comes to my emotions and my words, I find that tense and perspective are the best tools I have for bringing readers into the story quickly. For example: What happens when I tell this in the past tense — “My daughter could barely breathe” — versus when I tell it in present tense: “My daughter can barely breathe”? What happens when I tell a story in first person (“I was frightened“) versus when I tell them the story in second person (“You will be far colder than one would expect“)?

For me, past tense offers distance. As I write in past tense, I feel separated from the events. I can write without getting too caught up in the moment as I experienced it in real time. I am calm, almost clinical in my descriptions. It reminds me of the unwavering steadiness I’ve been able to construct in moments of real trauma by simply breathing deeply, disassociating from my emotions, and behaving like a soldier on a mission. In past tense, I am a reporter, and even when I report on the raw and furious emotions in our family’s history, it is with a detached, analytical eye.

Present tense is where I get you invested. I am here, in the sun-filled living room, with the baby in my lap who is struggling to breathe. Or, I am lying on the floor of my basement in the cold dark, and I think, for a moment, that I can hear my screaming daughter two floors above me as I sink into the drugged sleep of a woman past the edge of exhaustion. You are watching me in real time. Neither of us knows what comes next. We are both — writer and reader — in my mystery. Continue Reading…

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Oversharing, Awareness, and the Muddled Middle

http://mamalode.com/story/detail/how-blood-dancesWhen my medically complicated daughter was only a few years old, a close family member said something that I’ve never been able to forget. I’ve thought about it often, especially as I’ve been writing about my daughter so publicly.

This family member was a new parent with a fussy, unhappy baby. He was complaining that nothing he and his wife were doing to soothe their baby was helping, and I asked if they’d asked any of the parents in their new baby group for ideas.

“No,” he said, “we’re just more private.”

“But maybe someone knows of something — a product or a position or something — that might help,” I countered.

“Look, that’s not how we are,” he answered. “That’s more you. You’d tell any random stranger in your kid’s kindermusic class all about her medical problems no matter what they’d think about you.”

At the time, I felt slapped. I felt hurt, and I felt judged. The tone with which this was delivered was so derisive, as though I was indiscriminately blurting out the story of Sammi’s first cardiac surgery to anyone who didn’t run away when I opened my mouth. It made me feel like an embarrassment.  Continue Reading…

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Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

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Handouts for Doctors

Have you read my chart?Over and over in my head, I dissect what went wrong with my advocacy for my daughter.

When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.

When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.

We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed. Continue Reading…

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Appreciation

For roughly six months — from about eighteen months old until about two years old — Sammi was a normal toddler. She did normal toddler things, had normal toddler colds, slept like a normal toddler. We moved from one house to another, and she adjusted as toddlers do — haltingly, in spurts of joy and regressive frustration. She and her older sister, now both on two feet and walking, hand in hand, moved through the world as a little team. They explored our new home, finding the places they could inhabit and climb, staring out new windows onto an unfamiliar street. I, hausfrau and telecommuting consultant, bustled around in fits of unpacking and putting-away.

We began getting a box of vegetables every week from a farm. I learned to cook kohlrabi. It was the very picture of domestic cliche. I saw us in the Paul Simon song “Beautiful,” singing to myself, “Back in the house, family of four, two doing the laundry and two on the kitchen floor.”

This could work, I thought. This could be ok.

Sleeping toddlerThe shoe was waiting to drop, however. Regular struggle steals more than the moments in which it pushes us; it steals the innocence of all moments before and after. That summer when I set up house, learned to cook, anticipated Ronni’s kindergarten year and toilet-trained Sammi — that was another tease, another prelude like my easy pregnancy. Something sinister was always coming. Is always coming.

Sammi’s ears were perforated by tiny tubes — common among children now, she’d had them placed the same day that her doctor had discovered her double aortic arch. It meant that infection didn’t sit, festering, in her ears when she got a cold. It either drained into sinuses or, sometimes, out of the tubes and onto her pillow, leaving a puddle of ooze smeared across her face and in her hair as she slept. Once, I arrived at her child care to find her still asleep, the ooze soaked through her mesh cot and dripping on the floor below her. I took her to the pediatrician on-call — not our beloved regular doctor, but a cranky older man who’d seen everything.

“It’s earwax,” he said, when I described how I’d found her.

“But it was green,” I explained, “and a little orange.”

“Not an infection,” he declared.

We went home. The next day, her face was swollen and she had a fever. I called our pediatrician, who prescribed ear drops, oral antibiotics, rest, fluids.

This scene began to repeat itself until, ostensibly, the tubes fell out or became useless. Infections began to collect in her sinuses on a regular basis.

Her pediatrician mentioned adenoid surgery offhand. An aside. Maybe. For later. If this didn’t improve. Also tonsillectomy. Maybe.

David and I knew, the minute that the words “adenoids” and “tonsils” released themselves into our orbit, that Sammi would have them out. We saw it coming and waited for it, impatiently, like a train terribly late but utterly expected to arrive: she’d have them out eventually. The pediatrician had a magic number, and that was three. Sammi needed to have three sinus infections, and then we would return to the otolaryngologist for tonsil/adenoid assessment. There was no doubt she would have three infections, and so after the first, we secretly hoped that the next two colds would end up there. Colds became fevers became sinus infections became antibiotic stomach issues. The autumn and winter filled themselves with her misery, head down on a large cushion on our living room floor, watching tv limply.

When the otolaryngologist examined her in February of 2008, he used the words “impressive” to describe her tonsils. When she opened her mouth, he said, “Oh my lord.” The tonsils and adenoids came out in mid-March, her fifth experience with general anesthesia. Her airway issues interfered with her recovery from the anesthesia, forcing us to stay overnight in the hospital with her. A family member visited and observed, from the foot of the bed, Sammi propped against her pillows watching cartoons.

“Dora!” Sammi croaked, squeaky and hoarse at once. She clapped.

That family member burst into tears.

I could not understand what was wrong, and asked her. She said, “It’s just so hard to see her like this!”

Like this?, I thought. Happy to watch cartoons in bed? Eating a popsicle? This, I thought, is the best it gets. This is alive. This is another round of anesthesia over, another defective part of her gone. This is a damn party.

I am on guard. The perfect moments — children playing in a living room of empty boxes, summer squash sauteing on the stove, medicine that works, surgery that doesn’t kill my child — the perfect moments are always before or after something else. Since Sammi was born, I have lived every experience partly in reflection and anticipation, asking myself how I will appreciate or regret it later or how it compares to the moments before.

It’s a hoarding, truly. I am collecting my time with my children, categorizing it, weighing it, blessing and cursing it and setting it up on display in my head for assessment. The through line: are you appreciating this?

Well? Am I?

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