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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The Teal Pumpkin Project: Because We Remember

teal-pumpkin-remember

When my daughter Sammi was five, Halloween could have been just horrible.

Just a few months earlier, Sammi had been diagnosed with a disease called eosinophilic esophagitis. An inflammatory condition of the esophagus — the tube that runs between the mouth and the stomach — it is poorly understood and responds to only a handful of imperfect treatments. The treatment we chose for her was called the Six Food Elimination Diet, a set of food restrictions that required her to avoid anything with dairy, soy, eggs, nuts, fish, or wheat. We were already vegetarians; this was a huge lifestyle change for our entire family.

Sammi had just started kindergarten, learning to read and write and follow instructions in a classroom that necessarily had been forced to eliminate Play-Doh (wheat) and to keep a small box with “Sammi-safe” snacks available for the days — most days — when she could not eat the shared snacks brought by her classmates. It was a rough start. And then, it was Halloween.

On this particular diet, the only kind of typical Halloween candy she could eat were Smarties and Dum-Dums. All other candies contained a forbidden item or were produced on equipment that might be shared with a forbidden item, and so I tried to figure out how to save Halloween. How would it be to walk from house to house and say, over and over again, “No, you can’t eat that one. No, you can’t eat that one either. No, no, no”?

Finally, I decided to solve our problem with a combination of money and magic. Continue Reading…

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The Long Arms of Childhood Illness

Affordable care act calculator

If you saw my two daughters today, you would never know that some medical insurance companies would historically have considered them uninsurable.

My youngest daughter’s history of illness has been documented in my blog and detailed in articles in a variety of publications. From infant reflux to laryngomalacia to a congenital heart defect, from eosinophilic esophagitis to chylothorax, she has been under general anesthesia 17 times in her eleven years. Though the first nine were full of medical intervention, the last two following her final surgery have been nothing short of miraculous for her. She now eats well, has full energy, is growing, and leads a completely normal life. She has a pediatrician, a dentist, and an orthodontist — a far cry from the pit crew of specialists she used to see.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life. Continue Reading…

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Your Strange Diet, Day One

There are hundreds of articles on the internet and in parenting and health magazines about what it’s like to deal with food allergies. From the relatively minor challenges of mild lactose intolerance to the devastating effects of an anaphylactic reaction, there’s advice on avoidance and labeling, special medical alert bracelets and school safety plans. There are lists of substitutions for these newly dangerous foods, recipes for making things “(fill-in-the-blank) free,” and products popping up on shelves to replace the foods you used to love before they became a danger to you or someone you love.

kitchen cabinetIt’s easy to find those articles. What I felt was missing was an article to help families in those first few days. The day after a child is first raced to the emergency room with a swelling throat, or after the gastroenterologist hands over the celiac diagnosis, or after an oncologist tells someone to follow an anti-cancer diet, they stand in their kitchens and stare down their former life  — and their kitchen cabinets — without knowing what to do first.  Continue Reading…

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