The stories I tell about my daughter — and about my experience as her mother — feel as if they belong mostly to me. For so many reasons, I’ve turned out to be the person who’s handled the majority of her health issues, a role that feels as anachronistic as it does unchangeable. I’ve written very little about Sammi’s sister, Ronni, and perhaps even less about her father, David, except in first-person-plural, the other party implied whenever I write that “we” worried.
When we found out that Sammi’s aorta was the problem, it was a total shock — so shocking, in fact, that David had not come with me to the hospital that day. He’d been visiting his grandmother, who had pneumonia, and as a precaution against spreading it, he’d stayed away from the children’s hospital. My friend Cathy came with me that day. It was Cathy who sat next to me in the consultation room as the doctor explained what a double aortic arch was, and Cathy who looked me in the eye and told me it would be ok. It was Cathy who held Sammi as I called David at work and told him to get out a pen and start taking notes. It was Cathy who stepped outside with me and my woozy baby into the bright, mocking sunlight and steered me toward lunch, breathing, and reason. She was irreplaceable — exactly the presence I needed.
I remember not wanting to tell David, wishing I could give him another day without knowing what was about to happen. Nearly four years later, he had the chance to do that for me, and he did.
Every summer since Sammi was two, I’ve gone away for one weekend to the Indiana Fiddlers’ Gathering, a musical festival for traditional string music in a park over the grounds of the Tippecanoe battleground. As an old-time fiddler myself, it’s an opportunity to be immersed in the music I love, to feel the air on my skin in a way that mothers don’t often feel with young children at home. It’s my get-out-of-parenting-free weekend, once a year.
A week before the Fiddlers’ Gathering in 2010, when Sammi was four, she had her first endoscopy. The brusque and busy doctor had emerged from the operating room after the procedure with a glossy page of photographs of Sammi’s esophagus.
“See here?,” she said, pointing to a shiny spot in the photo, “This is something I sent out for biopsy. It could be yeast — that sometimes happens when the kids take these reflux drugs for so long — but it could be something else. We’ll let you know when we get the results.”
David and I squinted at the photo, “What could it be?” I asked.
“Well,” she said, a step away already, “there’s a chance it could be this thing we’re seeing nowadays called allergic esophagitis. It’s a big deal. Let’s hope it’s not that.”
“What do you do about that?,” I asked as she walked another step or two away.
“There’s a complicated diet. Sometimes they can give you some drugs. We have a specialist for it in our practice. Hopefully it’s just yeast.” By the time she finished talking, she had already turned her back to us and was walking away. A nurse walked us to the recovery room to sit with Sammi as she woke up.
For days, I listened for the phone call. My hand was on my cell phone, my ears prickling with the vigilance. On Friday, when I left for the fiddle festival, I told David to get in touch with me if the doctor called with results.
I phoned him on Saturday from my tent, asking “Did the doctor call?”
There was a pause. “No,” he said. “Sorry. Not yet.”
The weekend was soul-enriching, as I knew it would be. I arrived home Sunday, dirty and happy, unloading tents and camping equipment and my fiddle from the car. His mother was there for the afternoon, playing with the kids. David asked me to come up to our room. He closed the door. He said we needed to talk.
“The doctor called on Friday,” he said. “I didn’t want to ruin your weekend.”
Sammi had been diagnosed with eosinophilic esophagitis. It is, we would come to learn, a black-and-white disease: you have it or you don’t. The diagnosis is lifestyle-altering, unclear, prognosis poor, and ambiguously treated.
It was the end of our little world as we were coming to know it. David delayed that end for me by 48 hours. In the days that followed — frantic, drowning days — I knew that he had sat with that knowledge alone, no one to talk to, for two nights.
That was the most gallant, valiant, and noble thing anyone will ever do for me.
If I mention him very little in our story, it is partially because in just that weekend, he did enough for me to treasure him for many years to come.