Broken, Brittle, Patched, Softening

babysammiShe was outside my body for only a few moments before someone was suctioning her throat. I was paralyzed on an operating table ten feet away and I could hear the sound of the suction tube interspersed with the sound of her newborn cries.

“Listen to her cry,” the midwife, at my side since the start of the c-section, said encouragingly. “That’s a solid cry. She’s strong.”

She was six weeks old when she had her first bronchoscopy, 13 months old when she went under general anesthesia for the first time, and fourteen months old the first time a doctor opened her body up and laid an expert hand on her tiny aorta.

She was four years old when she started having regular endoscopies. She was five years old when she started remembering the road to the hospital and asking me if today was a day she’d go to sleep there.

She was eight when, finally, they fixed what was wrong.

She was nine when the bullying started. Continue Reading…

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I Don’t Want to Write About Politics

politics-is-everythingI don’t want to write about politics, but every piece of my life is controlled by it.

I woke up Friday morning and realized my high-school-aged daughter had slept through her alarm. Her high school offers tremendous opportunities for academic and extra-curricular rigor, but if she wants to be a member of the honors society (a prerequisite for her preferred college admissions), she also has to do community service and show some proof of outside-of-school leadership. Thursday, she went to school all day, helped teach at her religious school, and then attended a meeting of a task force at our synagogue, returning home at 8:30pm to begin her homework. Educational policy has set this system up for kids like my daughter, a hamster wheel of achievement that burns kids out by the end of their senior year. Politics made her exhausted today.

When I came downstairs Friday morning, my younger daughter sat at the kitchen counter watching YouTube videos and eating breakfast. Though she seems healthy now, the years of worrying about her growth curve make my furtive glances at her food choices an instinct. I note the volume and count the calories in my head, inventory her planned activity for the day, and check myself; she’s fine. A part of her history stems from misdiagnosis her doctors made and for which they never apologized, a reality that I suspect comes from their fear of lawsuit. That misdiagnosis will stay on her medical chart, making her vulnerable forever to the caprices of health care legislation. My 11-year-old may be doomed to a life of wildly overpriced health insurance. Politics will someday make her — or keep her — sick. Continue Reading…

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Tell It Again

It is 2005, and my newborn daughter’s breathing is wet, gurgling, raspy and fast. It gets worse every time I feed her, and when I consult my dusty copy of Dr. Spock to see what he says on the topic of infant breathing, it tells me that she is taking far too many breaths per minute.

I take her to the doctor, who waves me off. “Rapid breathing of the newborn,” he says. “She’s fine.”

It gets worse and worse and finally, we make an appointment with a specialist. Terrified that the specialist will send me back home, where I have to turn my tv louder to hear it if my six pound month-old baby is breathing in the same room, I wrack my sleep-addled brain for a way to convince any doctor that Something Is Not Right With This Baby.

And then I find USAmma.

On the parenting forums at Mothering.com, USAmma is posting regularly about her baby daughter who suffered from terrible reflux. Though she is active on several forums there, most often I see her answering questions about GERD (gastro esophageal reflux disease). If any parent mentions reflux, inevitably, USAmma responds. At one point, she shares links to a series of videos she and her husband had made of their daughter exhibiting behaviors consistent with severe reflux.

It is my light bulb moment. I take the tape recorder I usually keep in my violin case — to record fiddle tunes from local fiddlers — and set it next to me on the couch. I turn off the TV. I record my baby breathing, then nursing, and then breathing after nursing.

When I play the recording for the specialist, his eyes widen. He rewinds, listens again. Then he gives her a diagnosis. As I leave, he thanks me for making the recording.

“That was very smart,” he tells me. “Great idea.”

I write to USAmma, and thank her.


It is mid-2006, and I am going out of my mind with the tedium of at-home motherhood.

I hear about a new blog network called Zaadz. A friend from my old life, someone who’d championed my work and enjoyed even my boring technical writing, tells me to start a blog about playing the fiddle and writing a book. “Call it ‘Fiddle and Quill,'” she suggests.

I call it “Here we go,” instead, and start writing about what’s happening. I tell the story of my sick little baby’s birth — a series I call “Woah Baby” — and out of no where, a mother from Alaska contacts me to say that her son, born a week after my daughter, has the same diagnosis.

We chat online every day. Her son vomits; my daughter wheezes. She lives in the country; I live on an alley in the city. Alone in my kitchen with a baby constantly attached to me and orders not to take her out among people and germs, I see my friend in Alaska as a lifeline. Without her, I would be heartbreakingly lonely. In the process of comparing medical notes, we become fast friends.

I keep writing our story. She keeps reading.


It is 2014, and my baby is eight years old.

I join a committee at our local synagogue and find myself the youngest person in the room by more than a decade. Everyone else has raised their children. I am intimidated, wondering if I have enough in common with this group to forge relationships. I needn’t have worried; the committee is full of good souls with open minds, and we work together well.

Several months into the work, I learn that my daughter will need cardiac surgery — her second operation, and more complex. Distracted and flustered, I walk into our monthly meeting and share the news. I expect nods, side-hugs, and perhaps offers of ambiguous help. Instead, one committee member looks across the table with faint tears in her eyes and says:

“Did you know my son was in that cardiac ward for over a month a few years ago?”

I hadn’t known. She tells me about the virus that attacked his heart, the weeks she spent in the hospital with him, and the recovery he made thanks to the very same surgeon who would soon be operating on my daughter. She talks about her current volunteer work on that same ward, the wonderful nurses and the dedicated volunteers who will surely make our stay as easy as they can.

As the weeks go on, she checks in with me. Before the surgery, she sends me an email, and after it’s over, when I email the large group of well-wishers with the good news that it was a success, she is one of the first to respond.

“So glad to hear! Obviously, still a ways to go, but sounds overall like good news. Phew!”

Years later, she admits to me that she worries about how much she shares the story of her son’s illness and how it affected her. When she says that, my own heart sinks a little. I, too, worry that I talk and write about my daughter’s illness too often. Then, I think of the stories above — how someone’s willingness to share their experiences had a direct and positive impact on exactly the person who needs that information most.

Where would I be without USAmma?

Where would I be without my friend from Alaska?

Where would I be without my fellow committee member?

Begging for the recognition of a problem. All alone in the world. Terrified without a soul who understood me. 

I’m going to keep talking and writing. I hope others do the same.

 

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Feeding the Democracy

scones for the aca

The house was quiet last Friday night after an evening of happy chaos. My children tucked into bed, I faced the kitchen with resolute attention.

On the stove, a nearly-empty pot of lentil stew was developing a crust. Next to it, the picked-clean brownie pan shone with spray-grease, and a cutting board with the shreds of peeled carrot and the ends of a cucumber was topped with my best chopping knife, visibly dirty. The sink was empty, but clean dishes dripped on a towel on the counter above my humming, hardworking dishwasher. Every measuring cup and spoon in the house awaited me.

I put on some quiet music and hatched a plan. First, set the oven to pre-heat. Get the next set of ingredients ready before you tackle the pots on the stove. Make some tea. 

Every moment saved is vital to a mission of importance. I learned this in the years I followed this same set of late-night tactics to feed my family under a set of ridiculous dietary restrictions. In the evenings, I often made snacks, planned the next night’s meal or the next morning’s breakfast. I tried to clean my kitchen every night too, so that even I could start fresh the next morning.

It didn’t change my daughter’s diagnosis if I stayed on top of meal planning and dishes, but it contributed in a different way. When I didn’t do these things, I woke to a set of daunting tasks that kept me from pursuing the bigger issues of my daughter’s health care. If the day started with me unprepared, I played catch-up and my family absorbed that energy, too. Giving my family some sense of normality in what seemed like totally abnormal circumstances meant more work for me, but the results were worth it. As we dealt with a new set of daily routines and limited access to our previous life, whatever I could do to lengthen the fuses of my family had value.

I had to feed my family through that crisis. And now, I’m trying to feed my larger family through what’s to  come. Continue Reading…

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In Defense of Compassion

leaves

Most of my adult life has been propelled, in one way or another, by compassion.

As someone who began making a career in internet technology during the dot-com boom, I was always uneasy with what on earth I was doing by pushing pixels across a screen for a living. Who did I help, making web sites to prop up the egos of CEOs and corporate shareholders? It took me years to press my way into service to something with more value to humanity. By 1999, I was using the pixel-pushing skills I’d learned to support the voices of non-profit organizations. Necessarily, the budgets and the ability to innovate came later to these organizations. I could not charge them money they did not have; it was not greed that motivated their protest. My prices as a freelancer changed to reflect this. I adjusted and leaned toward compassion.

Then, when my children were born in the early 2000s, my entire life became an exercise in compassionate listening. A baby cried, unable to manage her emotions or get her needs met in any other way, and I held her. I sang to her, I soothed her. It seemed unconscionable to behave any other way. Another baby was born, this time sick and in pain, and she cried even more and for far longer than the first one had. My compassion was called upon constantly, to weigh my own needs against hers and to ask myself whether she had any other means of expressing her misery, any reserves of patience or space in her brain to make the developmental leaps a child with a full stomach and no pain can make. She did not, much of the time, and I needed to dig deep to find my own untapped wells of compassion. She needed every drop I had. Continue Reading…

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