They’re Talking About My Family

talkingaboutusThe U.S. House of Representatives voted yesterday to strip away financial protections for people with pre-existing conditions. Those people include, tucked away in the millions affected by this legislation, my own family. Here’s what they had to say about me (asthma, allergies), my older daughter (congenital kidney condition and severe menstrual cramps) and my younger daughter (congenital heart defect).

They said we weren’t their problem.

Sorry Jimmy Kimmel: your sad story doesn’t obligate me or anybody else to pay for somebody else’s health care.” – Former Rep. Joe Walsh, IL

They said we should adjust our priorities.

And you know what, Americans have choices. And they’ve got to make a choice. So maybe rather than getting that new iPhone that they just love and they want to spend hundreds of dollars on that, maybe they should invest in their own healthcare.” – Rep. Jason Chaffetz (R-UT)

They said we weren’t “good people.”

My understanding is that it will allow insurance companies to require people who have higher health care costs, to contribute more to the insurance pool which helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy, and right now those are the people who’ve done things the right way, who’ve seen their costs skyrocketing.” — Rep. Mo Brooks (R-AL)

They said if we were poor, we wouldn’t want health care anyway.

Just like Jesus said, ‘The poor will always be with us,’…There is a group of people that just don’t want health care and aren’t going to take care of themselves…Just, like, homeless people. … I think just morally, spiritually, socially, [some people] just don’t want health care.” – Rep. Roger Marshall (R-KS)

They lied to us.

“JOHN DICKERSON: So I’m not hearing you, Mr. President, say there’s a guarantee of pre-existing conditions.

“PRESIDENT DONALD TRUMP: We actually have — we actually have a clause that guarantees.

“JOHN DICKERSON: Okay, excellent. We got there.

“PRESIDENT DONALD TRUMP: We have a specific clause–

“JOHN DICKERSON: Let me ask you–

“PRESIDENT DONALD TRUMP: –that guarantees.”

They said we could just leave.

People can go to the state that they want to live in…States have all kinds of different policies and there are disparities among states for many things: driving restrictions, alcohol, whatever…” – Rep. Robert Pittenger (R-NC).

They said we didn’t exist.

Less than 10 percent of people under 65 are what we call people with pre-existing conditions, who are really kind of uninsurable.” – House Speaker Paul Ryan (R-WI)

whoareyoureps

This has been a Finish the Sentence Friday post. This week’s sentence was “They call me…” and is hosted by the thoughtful, speculative, inspiring Kristi at FindingNinee.com.

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Practice Mom

tween
Every morning when I wake up, I lie in bed and listen to the radio for a few minutes. I am a morning layabout, suddenly, even if it’s just for long enough to hear the news snippets and the day’s weather. Below me, I hear the muffled sounds of my two daughters getting ready for their day. They’ve been up longer than I have.

This year’s mornings, I find I am no longer a lunch-maker, a breakfast-nagger, a pill-preparer, or even a walk-you-to-school mother of young children. This year, my daughters do all of that themselves.

Much like in the early years of my motherhood, when I tiptoed around my own instincts to see what worked and what didn’t, I am auditioning my moments of parenting with my tween and teen daughters. Particularly with my little one — no longer quite as little — I am working on the line between playful teasing and hurtful taunting; on the right time to help her find solutions to her worries and the right time to listen and offer no advice at all. 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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Spring Breaks: 2011-2017

It is April 7, 2011, and my family is giddy.

Sitting around the sticky table of a local frozen custard shop are my daughters and husband, each of them with a mountain of gooey dessert: piles of custard under clouds of whipped cream and rivers of fudge. My younger daughter, aged 5, is grinning ear-to-ear. I’m snapping pictures like the mother of a baby trying solid food for the first time. At one point, I step outside to breathe the fresh air of a world restored.

For the ten months prior to today, my little girl has been on a path to discovery, she and her team of doctors searching for the food protein that’s causing the strange patches of white blood cells in her esophagus, the patches that were keeping her from swallowing well. For ten months, she’s been avoiding a list of common allergens — dairy, soy, egg, nuts, and wheat — and undergoing tests to see if the culprit could be found. Earlier today, we got the news that only one food was left to be added, since all the others had seemed to cause her no ill. Adding that last food — dairy — means that she can eat out at any restaurant she liked. It means that, for the first time in ten months, we can travel without worrying about her food.

We leave the frozen custard shop and embark immediately on a road trip. We feed her everything she’s been missing: restaurant pancakes with butter and syrup, cheese popcorn, candy bars, pizza, string cheese and yogurt. For the first time in nearly a year, I don’t carry a big insulated bag full of food for her. We rejoice, but under the rejoicing is the knowledge that this is just another food trial. It’s both a first meal and a last — this is the last food trial, and everyone expects it to be a failure.

Spring break, 2011: last meal. Continue Reading…

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Widening the Lens

widening-the-lens

Many years ago, before I had children, I joined the staff of a large nonprofit organization as what I thought would be a relatively insignificant cog in a mighty machine. Instead, I was surprised when my new boss put me in charge of a committee to plan a big redesign of the organization’s enormous web site. I’d never sat on a committee or even attended a committee meeting before, but my boss said it wasn’t hard. I trusted her.

What followed were were months of meetings and planning sessions. We interviewed vendors, discussed budgets, and were deliberate in our choices. We began the nearly inconceivable task of moving tens of thousands of pages of content from one system into another, page by page, which took hundreds and hundreds of hours. For the unappreciated staff members who were responsible for their departments’ pages, I threw “parties” in our training room and fed them cookies while answering their technical questions. During that time, I went home each night to my first baby, who was born in the early stages of the project’s conception and who turned one just before the new site launched.

The launch was an unmitigated disaster.

The staff was thrilled to have it complete, but we had missed a major consideration. Though we had been thorough amongst ourselves, the organization for which we dozens of staff members worked was a professional association. Our members used this web site for their work — for reference, for activism and advocacy, and for their own teaching tools. They were our most important stakeholders — and we hadn’t asked them a thing about the site before it launched, a fact which they — appropriately — did not take well. After an onslaught of angry emails, the director of the organization flew several board members and a dozen other influential general members to our office on a Saturday. I kissed my baby girl and my husband goodbye and went into the office.

I was 28 years old. I had never met a member of this organization before. I had never been to a board meeting. Continue Reading…

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