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…
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 flashed the woman behind the counter at Walgreens one warm spring day in 2002.
When I say I “flashed” her, I mean that I lifted my shirt and revealed my torso, bra and all. And when I say “the woman behind the counter at Walgreens,” I mean the pharmacist. And I remember that it was a spring day in 2002 because I was very pregnant with my first child, and I remember that it was warm because the heat was aggravating the very rash for which I was trying, desperately, to get a tube of prescription steroid ointment.
Earlier that month, I’d been having lunch with friends of mine when one of them asked me, “So, why are you rubbing your belly like that all the time? Is the baby kicking?”
I looked down and realized that I’d been rubbing steadily, absentmindedly, at a patch of my 7-months-pregnant belly. When I thought about it, that patch was kind of itchy, and I told him so.
“I bet it’s crazy when your skin gets stretched like that,” he said.
I went home that night and noticed that the stretch marks on my belly were looking strange. They were 3-D now, little valleys on the landscape of my body, and in the area I’d been scratching, a few of them were now home to tiny red dots. I rubbed some cocoa butter into them and went to bed.
Over the course of the next week or two, the red dots spread. I tried more cocoa butter, but it didn’t work. I made sure I moisturized my belly several times a day, but that didn’t help either. It kept getting worse. After a few weeks, I went to see my midwife. She took one look at my abdomen and bit her lower lip.
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…
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…