When my medically complicated daughter was only a few years old, a close family member said something that I’ve never been able to forget. I’ve thought about it often, especially as I’ve been writing about my daughter so publicly.
This family member was a new parent with a fussy, unhappy baby. He was complaining that nothing he and his wife were doing to soothe their baby was helping, and I asked if they’d asked any of the parents in their new baby group for ideas.
“No,” he said, “we’re just more private.”
“But maybe someone knows of something — a product or a position or something — that might help,” I countered.
“Look, that’s not how we are,” he answered. “That’s more you. You’d tell any random stranger in your kid’s kindermusic class all about her medical problems no matter what they’d think about you.”
At the time, I felt slapped. I felt hurt, and I felt judged. The tone with which this was delivered was so derisive, as though I was indiscriminately blurting out the story of Sammi’s first cardiac surgery to anyone who didn’t run away when I opened my mouth. It made me feel like an embarrassment.
As I’ve thought about it in the intervening years, though, I’ve been able to separate out what this family member was trying to tell me: that everything about his child felt like a reflection of him, and the less picture-perfect moments were not the ones he wanted to share. For me, all I could imagine was that if just one parent had said to me, in Sammi’s infancy, that they had been frightened by their baby’s fragility, laid awake listening to the sounds of their sick newborn, or had to fight for health care from a specialist, I wouldn’t have felt nearly as alone.
I wish everyone told every random stranger about their children’s medical problems if they thought it might help that stranger. I wish someone had told me.
Somewhere between oversharing and being shut tight is the muddled middle, where we evaluate the potential good that can come of talking about our struggles. There are no sharp edges to this space, only a complex weighing of what feels helpful to us, the person with whom we’re sharing our stories, and the greater good. I like to hope I’m living in that middle.
The essay below appeared in Mamalode Magazine in March of 2015. In my first efforts to raise awareness about the strange congenital heart defect with which Sammi had been born, I wrote this piece that described the interplay of the systems involved — respiratory, circulatory, gastrointestinal — as a dance. Less frightening than the way I would come to see it later, as a tangle, the metaphor of dance was beautifully illustrated by the talented image design Mamalode chose. Mamalode has been a great place to publish, and I always appreciate their careful editing.
How Blood Dances
Originally published in Mamalode
March 5, 2015
Before my younger daughter was born in 2005, I hadn’t thought at all about the delicate parallel dance of air, food, and blood-flow in the human body.
There is a place in all of our chests where these three forces can whisper and beckon to each other from centimeters apart. Air flows down the trachea through our throats and into our lungs. Food and liquid are swallowed and move from the mouth down the esophagus into the stomach. Blood pumps via the aorta, which creates an arc from the heart down to spread and become every other artery in the body. They live so close to each other; I never knew how close. It’s dangerously close.
My daughter Sammi was born with a double aortic arch. Instead of that one graceful, fountain-like arc, her aorta was split in two, both sides pumping blood through and meeting again, together, to stretch into fingers that extended everywhere else in her tiny body. The aortic arch that split and met again created what was known as a vascular ring. The ring encircled her trachea and her esophagus.
Now the whispering between these three conduits—air, food, blood—was overpowered by blood. The double aortic arch quieted the air, quieted the food, made them slaves to its pulse. When her pulse quickened, the arch tightened, trapping food and intensifying the already tight squeeze of air. In the space that could have fit in the middle of my palm, the major systems of her body were at war.
This post was written in response to a Finish the Sentence Friday prompt of “If I could teach the world one thing…” hosted by Kristi from Finding Ninee.