Thank you, Mothering.com

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In 2005, there was no Facebook.

In 2005, there were no smart phones or tablets or ways to send audio and video to anyone.

In 2005, if you were like me: alone with your preschooler and your baby and your empty house and almost no friends with children, the only way to connect to parenting wisdom, camaraderie, and a stolen moment of sanity several times a day was Mothering Magazine’s online forums. They were called the “Mothering Dot Commune,” and, for me, they served the purpose that smart phones and social media and texting serve now. They were, in a lonely world, a lifeline of support and connection. I relied on them for everything from pregnancy support (August 2005 Due Date Club!) to toilet training ideas to vegetarian recipes. I was steeped in gratitude during my pregnancy with my second daughter, but never more so than after she was born, when a regular user of the site who I’ll call Shanti helped set the course of my parenting in a way I’ll never forget. Continue Reading…

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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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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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Unlearning the Body

chocoAfter six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.

The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.

Instead, she nibbled timidly and said, “I’m full for now.”

It was heartbreaking to realize that, as far as she’d come — years of false diagnosis with reflux, then eosinophilic esophagitis, then a revelation that her swallowing problems stemmed from a structural obstruction in her chest, culminating in major cardiac surgery — she still had more hurdles to jump. Of course we couldn’t undo eight years of her experience of eating in one day at the candy store. Why had I been so naive? Continue Reading…

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Blame Needs a Target

When Sammi was a newborn, the sleep deprivation was expected and, though unpleasant, not unreasonable. Ronni had not slept well, and I was ready for Sammi not to sleep well. When her 90-minute-maximum sleep schedule extended into three months, and I was back at work, I gave in and hired a postpartum doula to come twice a week and give me five consecutive hours of night time sleep. I felt no end of guilt around this; other mothers could survive on this kind of broken sleep without help, and even if they were miserable, most of them could not afford the kind of help for which I was paying someone. I needed that sleep to function, and so I fought past my blame of my own body for needing it, and I slept for five consecutive hours, twice a week, for about six weeks, until I had to quit my job. Every night after that was broken into tiny fragments of light, fractured naps between feedings.

Still, this all felt temporary. Time crawled by as winter turned to spring. Sammi was growing more slowly, but she was not sleeping any better. Against the raw and crackling synapses in my brain that convinced me it was wrong, her new pediatrician and every other adult in my world convinced us to sleep-train her when she was eight months old. We opted for a method that seemed less cruel than others and promised she would be sleeping through the night in a maximum of twelve days.

floorNothing can describe the kind of screaming she maintained for hours every night. Following every lesson in the sleep book, I waited as far from her in the house as I could between scheduled “check-ins,” but the sound followed me. I cowered on the hardwood floor, hands over my ears, rocking like a traumatized child. I felt the screams vibrate through my heart. I was exhausted by months of sleep deprivation, fear of illness, and the completely new world I was inhabiting, but there was something more.

A mother understands the quality of her baby’s scream.

She was not screaming in frustration. She was screaming in pain. I knew it. I said it. I said it on day one and day four and day twelve and on day twenty-seven, when no one could believe how long it was taking to sleep-train Sammi.

Five months later, when she was finally diagnosed with a cardiac condition that involved, in part, her aorta wrapped around her airway, we were told that anytime her blood pressure rose, she would feel her airway constricting. It would hurt, they told us. Don’t let her get worked up until she’s had surgery.

Before we knew for sure, before a CT scan confirmed the diagnosis of double aortic arch, I blamed myself for being a poor parent who could not teach my baby to sleep. It must be, I thought, that she knew I didn’t really believe in sleep training; or that I was eating something that upset her stomach as it passed into my breastmilk; or that I hadn’t checked her bedroom well enough for drafts or spiders or wild wolves which must be charging at her crib as I rocked on the floor, listening to her screaming from the floor below.

After we knew for sure, I blamed myself for not pushing her doctors to find out what was wrong. I knew all along. I knew something was wrong; I knew that was screaming-in-pain, and I had not stopped it. I had not fixed it. All she needed was to be calmed, have her blood pressure drop so that her aorta would stop strangling her. Instead of holding her, I left her alone in there, to scream and choke all by herself.

Once I knew, I didn’t stop holding her. Not ever again. I am holding her still.

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