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.

This post is for the mothers out there who are waiting for your children’s surgeries; the mothers spooning pureed food into the mouths of babies too old for puree, who know something is wrong; the mothers racing to the emergency room again; the mothers defying the doctors who have no answer and trying someone else; the mothers awake at 3am, searching the web for “raspy breathing no fever” and “baby with blue toes” and “rapid breathing newborn” and “why is my baby miserable” and “baby refuses to eat” and every other thing that wakes them, worried, propelled by the belief that something just isn’t right.

This is my message: your persistence has value.

Story after story passes through the groups for “heart moms” on Facebook: I knew something was wrong.

I took him to a specialist.

I asked for another test.

I recorded his breathing.

I made a video of her eating.

I sent his records to another doctor.

I changed her diet.

I pushed for more answers.

We were all warned, in a variety of ways. Some doctors told us that we had postpartum depression or were “nervous moms.” One doctor winked at me when I wrote down the name of his diagnosis to look up later, a diagnosis which sounded simplistic and turned out to be inaccurate.

We were all given explanations, almost all of them wrong. Some were official-sounding: asthma, reflux, colic, eosinophilic esophagitis, esophageal dysmotility. Some were meant to shut us up: “a spitter;” “fussy;” “makes too much mucus;” “doesn’t chew enough.”

Nevertheless, we persisted.

The pictures scroll down my screen, babies and children with hearts that are scarred but fixed, at least for now. Because I’ve been there, I also see the mothers’ hearts that, despite the mysoginy that erased our names and the egos that ignored our truths,  persisted. When we were scared, we persisted. When we were worried, we persisted. When we were angry — furious and indignant over our children’s failing health in the wealthiest country in the world — we persisted.

Many women see themselves in the rallying cry “Nevertheless, She Persisted.” Though they may do their resisting more privately, the mothers sharing their stories during American Heart Month know this cry well. The American Heart Association, despite a country divided on health care, remains committed to the need for more and better coverage. The American Heart Association is calling on us to continue persisting, to let the current administration know that our children’s care (and our own, and that of our parents and grandparents and aunts and uncles and cousins) is worth protecting and improving.

I was warned and given explanations. Nevertheless, I was angry, and I persisted. Heart Families out there: you can, too.nevertheless-she-persisted-and-you-can-too

 

This is a Finish the Sentence Friday post hosted by Kristi from FindingNinee.com. The sentence this week was “I get really upset by…”

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One thought on “Nevertheless, We Persisted

  1. I really like how you combine heart awareness and the political messages in this post. It’s so true isn’t it? How men so often (especially those in power) shoot us down when they shouldn’t? Ugh. I’m glad you persisted with your daughter’s health. I’m glad I did too, when at first, my son’s docs told me that he’d talk when he was ready to.
    And oh wow. I will stand with you and persist when it comes to what’s going on in the world too, friend.

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