Actual, Real, Helpful Help

Swallow, My Sunshine: Bridge

A family in crisis, if they live in an active community of family or friends or both, will find themselves fielding regular offers of help. This is so many orders of magnitude better than the alternative of living in isolation, surrounded only by one’s own panic, but offers of help are not nearly as good as actual help, delivered while requiring as little as possible from the people who need it.

Article after article have been written about “ring theory,” the idea that, using a map of concentric layers around a person or family in crisis, support and comfort go in and complaints and requests go out. At the center of the circle is the person with the core issue; in the example of a family with a sick child, the child is at the center. While a parent might find their child’s howls of pain excruciating to hear, she would never dream of complaining about them to the child himself; more appropriate would be to complain to a good friend.

from story at http://www.latimes.com/nation/la-oe-0407-silk-ring-theory-20130407-story.html#axzz2kF8iBw9U

Illustration by Wes Bausmith / Los Angeles Times

This is common sense, but sometimes, the farther out from the center, the harder it is to remember.

Everyone knows not to complain to the parents of a sick child about how much work it is to support them and their child during this crisis, even though it is indeed HARD to be involved in a crisis, however little it really touches your own life. Being around fear and anxiety is, itself, traumatic. Still, we know, as ring theory tells us, to “dump out.” It becomes trickier when it’s not so much “dumping” our complaints as it is “dumping” the hard work of finding out what our struggling friends really need. Continue Reading…

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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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Second Guessing and Seventeenth Procedure

Ibodiesn the years since my daughter’s medical mystery was solved, I’ve struggled to silence the what-if voices that whisper to me in quiet moments. What if we’d figured this all out when she was two? What if we’d figured it out when she was four? What if we’d figured it out at five? What if her care had been managed by a multi-disciplinary team from the very beginning?

These what-ifs serve no purpose. They don’t change anything about the moment I inhabit right now, a moment in which Sammi, my resilient, remarkable kid is currently riding an enormous horse with her best friend after gobbling pizza with her last night and sharing pancakes with her this morning. Her legs fill in her jeans, her cheeks are full and bright and sun-kissed, and I am truly, honestly, not worried about her. The what-ifs can’t touch that. They can’t touch her future.

Still. 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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Feeding Therapy in a Vacuum

cerealHere’s the crazy thing about taking my 8 year old daughter to feeding therapy: no one important really knew we were there.

There was a complex set of circumstances that brought Sammi to the cheerful basement office suite forty minutes from our house. Unaware of this were a host pediatric medical specialists: an office of gastroenterologists, a cardiothoracic surgeon, an otolaryngologist, an endocrinologist, and her general pediatrician. Though all of them examined her, declared her capable of eating, and recognized that she did not, in fact, eat well, not one of them had recommended feeding therapy.

They didn’t recommend it when, despite the compression on her esophagus having been surgically relieved possibly for the first time in her life, she failed to eat any meal in under an hour — including a simple bowl of cereal at breakfast. Continue Reading…

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