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…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

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…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

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…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

When Being Right Doesn’t Matter, or Does

itmattersSomething was wrong with my baby daughter.

I said it to her pediatrician when she was just a few weeks old. He laughed at me, told me she was fine.

I said it in the emergency room when her chest and throat were retracting with her rapid breath. They gave her meds, watched her for a few days, sent her home with me.

I said it to her new pediatrician. She looked more closely, waited, told me to sleep-train her.

I said it again when everything failed, when she wouldn’t eat solid food, wouldn’t sleep through the night, couldn’t make it through a cold without hospitalization. And finally, finally, someone found the something. When they did, nobody said, “oops.” They fixed her congenital heart defect, the source of every problem.

I was right, but it didn’t matter.


Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Huddle Up

winter-1Every day, there’s something new happening that scares me.

In fact, every day, there are multiple things — here in the US, and other places in the world. It feels to me like we are balanced on a saucer held on the index finger of someone walking barefoot across a sea of marbles, and — moment by moment — people are plummeting over the edge. I wake up from my spot nearer to the middle of that saucer than 90% of the people on this planet, and I look at the news and try to decide where I will throw my tiny threads of possibility today.

It feels desperate. On the worst days, it feels ridiculous.

As this year ends, I am reminded of the years that my friends and family made contributions to causes that would likely never, ever affect them. Though I tried not to be a broken record, I did occasionally reach out to friends and family via social media and other means to support the charities working on research, advocacy and support for the conditions with which my daughter suffered. When her primary diagnosis was eosinophilic esophagitis, I asked for support for APFED, The American Partnership for Eosinophilic Disorders. After she had her second cardiac surgery, we suggested people make donations to Mended Little Hearts. These were good causes — they are good causes, and I’ll continue to support them even though my daughter’s health is no longer affected by these conditions — but the people we asked to contribute or share stories or raise awareness were likely largely oblivious to their existence before my daughter’s diagnosis awakened them.

In the last few weeks, the pitched voices of a number of needs in the wider world and in my community seem to have amplified. Part of that is due to #GivingTuesday, a campaign to encourage charitable giving after the materialistic trifecta of Black Friday, Small Business Saturday, and Cyber Monday. Part of the onslaught of need has also come out of the recent US presidential election, which has given rise to a level of societal panic I can’t remember seeing ever before in my adult life. Causes about which I care deeply — civil rights, women’s health, the social safety net, immigration and international diplomacy among others — seem to need support more than ever. I find my personal politics pinpointed perfectly as my friends add me to Facebook groups daily, my email inbox fills with requests, and every news story seems to offer me an action item.

This holiday season, there are so many bigger needs than those that affect my family. This holiday season, the needs affect my whole world.

I’m doing a few things differently this season, and while I don’t dare tell anyone reading this that my plan should be theirs, I’m finding it useful to think about what I can do to help in three ways:

  1. Actions that help the world
  2. Actions that help my community
  3. Actions that help my family

Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather