On Raising Bodies

When my first daughter was brought to me, pink and hot and smelling like something elemental and metallic, I could hardly believe how thrilled I was to see that she was a girl. It turned out that I’d wanted a girl more than I’d been willing to say. I loved everything about it: choosing her name, buying her cute clothes, and saying the word “daughter.” I assume I would have felt the same way about a boy, once I saw him, but I never got that chance. I have two daughters, defying my pregnant instincts and imagination both times.

The truth was that I was afraid of one monumental thing when it came to parenting daughters: screwing up their relationship with food. Continue Reading…

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In Their Season

“I wonder if the snow loves the trees and fields, that it kisses them so gently? And then it covers them up snug, you know, with a white quilt; and perhaps it says, ‘Go to sleep, darlings, till the summer comes again.’
― Lewis Carroll, Alice’s Adventures in Wonderland & Through the Looking-Glass

I. Swaddle

It is a sunny afternoon, and for once, my newborn daughter is sleeping soundly, peacefully if not quietly. The wheezing, gurgling sound from where the tissue of her larynx flaps against itself surrounds her perfect, gorgeous face — it says cchchhhh sssccchhhhh ssscccchhhhchhh. But her eyes are closed, and I pass her from friend to friend in my living room, easily, with no drop of her head or arm stuck in someone’s armpit. This invention, I say to myself, is freaking brilliant. I need ten more, just in case. Continue Reading…

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How to Feed the People You Host

holiday-table

I’ve spent some holiday dinners eating dry bread and salad.

In front of me on the table were platters piled high with other food, but because of a combination of my vegetarianism and allergies, only the bread and salad were real options for me. In those moments, I harbored no ill will toward my hosts; having hosted holidays before, I knew that it took a lot of work to accommodate the preferences and allergies of a complicated group of guests. It’s not a job for an inexperienced or inexact home chef. I knew all this as I sat and ate my undressed salad, nibbling on my plain bread, and I wasn’t bitter.

Still, I’ve tried never to do that to a guest in my own home unless I had no other choice. Over the years, I’ve had guests for Jewish holiday meals who ate no carbohydrates, no grains, no gluten, no dairy, no beans, no soy, no tomatoes, no nuts, no broccoli, no cinnamon — not to mention the years when my own child was on the six-food-elimination-diet or the chylothorax diet. I’ve managed, in most cases, to offer at least two tasty options to each person — even options that others at the table would enjoy, too. It takes planning, but it’s not impossible.

Here’s how I’ve done it: 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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Nevertheless, We Persisted

post-surgery-daughterFebruary is American Heart Month. My social media feed is currently split between political postings and photographs of babies and children with scars I recognize all too well — across the shoulder blade in back or right down the middle in front. Parents and grandparents I’ve met online through our shared journey are posting information about their children’s experiences, their families’ grief or triumph, and ways that their communities can contribute toward better outcomes for anyone born with a congenital heart defect, like my vibrant, finally-healthy daughter Sammi.

These images are unrelenting. They drag me back, every time, away from the image of the grinning, singing girl I kissed goodbye this morning and closer to the sick baby covered in wires and tubes. I negotiate the difference in leaps, then think back on what to say to the parents still in the thick of it. How will they make it to my present-day? 

Of course, the other half of my social media feeds are the political posts — assaults on freedom and confusing conflicts everywhere I turn. Truth is under attack there just as it was when I fought for Sammi’s care. Out of the mess tangling over and over itself in the news, however, came a surprise rallying cry intended to shut down a woman’s resolute message. To anyone who has followed US politics, the censure of Senator Elizabeth Warren by Senator Mitch McConnell is likely memorized by now, but for emphasis and clarity, it’s worth repeating:

“She was warned. She was given an explanation. Nevertheless, she persisted.”

It’s easy to turn this into a rallying cry for women, in general. So often, this is our only path to success, whether we’re discussing the fight for suffrage, land ownership, birth control, or just a seat at the board room table. What many women don’t know, however, is that infuriating as those indignities are, when what is at stake is our children’s lives, persisting is not a choice. It is an instinct. Continue Reading…

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