Across the Border

fromthebackI’ve been thinking about resolution and falling action, lately.

In any compelling story, there is a natural building of intensity that leads, as we all know, to a climax. A couple searches for each other, meets, falls in love, and commits or separates, and they’re left different, marked by their experiences. Or: a world is beset by confrontation and battle, factions emerge, one side is victorious or decimated, and a new world is born. Or: a child is born to a yearning mother, grows sick, struggles, stumbles, regains her footing, and is cured, revealing mother and child older, changed, and almost unrecognizable.

That’s the resolution. What happens next? What is in the falling action of my story, the third story, the one with a once-sick now-well daughter, and a once-frightened now-what mother?

My daughter is eleven now, almost three years past her final surgery, two-and-a-half years past the time she first began eating well, two years past her dismissal from all her specialists, two years past the first major gains in height and weight she’d had since her babyhood. I haven’t had reason — real reason, justifiable reason — to worry about her health in the last two school years.

It has been, in many ways, like becoming a mother all over again. Continue Reading…

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The Hands and Feet of Napping

meshugalunchWhen my daughters were little — five and two, perhaps — and past the age of napping, I sometimes found myself desperate for any way at all that I could get even a little bit of mid-day sleep. I cleared the lunch plates of their detritus of blueberries, macaroni, and blobs of yogurt, feeling the lethargy settle on me and press my eyelids down even as I heard the first gleefully-shouted requests to go to the park. No way, I thought. No park. I can’t even imagine it. The coats alone…no.

In this, I’m sure I was no different than millions of other at-home moms who begin their day at 5am and race through it until they collapse, bleary-eyed, into their beds at night. These other mothers almost certainly have their own strategies for recharging mid-day; I have friends who used anything from “quiet time in your room” to a walk toward the nearest coffeeshop. I tried some of these things but nothing really worked. If I insisted they stay in their rooms, the constant squealing, questions about “how much longer?” and requests for snacks kept my frustration at a low boil — not very restorative. If we went to the park or out in search of an afternoon treat, I was worn down further by the process of getting everyone ready and out the door and of keeping my squirmy running toddler out of the street.

In the end, on those days when I simply could not roll out another pancake of Play-Doh or braid another head of doll hair or read Eloise Takes a Bawth one more time, I weighed my exhaustion and ill temper against the potential damage of the television and, against all advice by the American Academy of Pediatrics, we — gasp! — watched a movie. Continue Reading…

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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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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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They Called Me Again

I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.

“Hello, is this the parent of Samara Lewis?” someone asked.

I walked several rooms away from my family and answered, “Yes, who is this?”

“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”

I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question. Continue Reading…

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