She was outside my body for only a few moments before someone was suctioning her throat. I was paralyzed on an operating table ten feet away and I could hear the sound of the suction tube interspersed with the sound of her newborn cries.
“Listen to her cry,” the midwife, at my side since the start of the c-section, said encouragingly. “That’s a solid cry. She’s strong.”
She was four years old when she started having regular endoscopies. She was five years old when she started remembering the road to the hospital and asking me if today was a day she’d go to sleep there.
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.
Our family, unlike the majority of Americans, has spectacularly good health insurance. It’s provided by an employer, and because of my husband’s combination of high-demand skills, excellent work ethic, and good luck, we’ve had the same coverage for more than a decade. Here’s how it works:
Every two weeks, my husband’s employer deducts $196 from his paycheck for our medical insurance.
Despite that, beginning on January 1 each year, we pay for 100% of the cost of every doctor’s visit, every prescription, every blood test, and every other medical cost until we have spent either $1,500 per person or $3,000 total for our family of four. That means that, until we have reached into our own pockets and paid $3,000, our insurance has not even begun to kick in.
After we’ve spent $196 every two weeks and $3,000 for medical costs, our insurance begins to pay 80% of every bill that comes in. We pay for the next 20% of each bill — a welcome change from the 100% we’d been paying before that.
As a family, once we have spent $7,000 on medical costs, our insurance begins to cover 100% of whatever medical expenses come next. Let’s review, then, the cost of medical care for our family in a year when someone gets really sick:
Every second of every day, life changes profoundly for someone on earth. A death, a crime, a lottery win, an election, a new job, a lost job, a child born or adopted, coffee spilled on the stranger who will become the life partner, a car accident that cripples, a letter, a diagnosis: the world shifts and reveals itself transformed.
Sometimes, the change is immediate; a woman gets the call about a baby being born and races off to the airport to meet her new child in a faraway hospital. On the flight, she feels the difference and labels it: that call made me a mother.
Other times, the change has to be carefully traced back to its root. The beat-up old car that college student drove made him the likely grocery-store connection for a group of giggling women, who introduced him to the woman he eventually married. Was his grandfather — the car’s original owner — the reason he met his wife? Where did that story begin?
Truth be told, this is a question of consequences. How do we know when we had a part in change? Also, how long should we wait to let go of a moment and its potential to alter the world? Is there an expiration date on an event’s power to reshape the future? Continue Reading…
February 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…