I saw Sarah's face in the casket that day.

A story of two children with Apert syndrome and the serendipitous meeting of their families

Sarah as a baby, summer 2014

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Staring into the casket was like seeing Sarah’s face

I peered into the child-sized casket and saw Sarah in Tyler’s face. They shared a diagnosis—Apert syndrome—and this was, sadly, the first and only time we’d met in person. It was spring 2020, though I don’t recall the exact month, only that the budding crab apple blossoms juxtaposed with the pall over that day.

Marion, Tyler’s father, scuttled to our side. Our family of seven was the only English group at an Amish funeral. We were the glaring anomalies among the most obvious anomaly: Apert syndrome. “I’m so glad you could make it,” Marion said, his voice breaking up through sobs and heaves. His demonstration of emotion defied my stereotypical understanding of Amish stoicism.

I took his hand, while Ben and the kids remained standing several feet behind us. We stood together over Tyler’s casket—Tyler, a boy of not quite three—and allowed the silence to envelop what could not be spoken or understood.

Marion sniffled as he adjusted the stuffed animal nestled in between Tyler’s embalmed hands. Those Apert hands: small, with fingers crooked like branches on a deciduous tree. Next, he introduced me to his wife, Jolene, and I stood aside, motioning to Ben. “Hi, Jolene,” I said. “I wish we didn’t have to meet this way. This is my husband, Ben.”

Ben said little, nothing I can recall. Jolene pinned her lips into a tightrope and said with a heavy sigh, “I’m just glad it’s over. He doesn’t have to go through all those surgeries anymore, and neither do we.”

Such stark honesty where I did not expect it. Marion was blubbering by then, begging me to help him put together a memory album with stories about Tyler. “To help people like us,” he said.

“Of course, of course,” I answered without hesitation.

Marion asked if we could join his family sometime for dinner. He wanted to show us photos of Tyler, reminisce about his short life. I smiled wanly. “I’d love that, Marion. Truly.” And I meant it, though I didn’t believe it would come to fruition. Not because of insincerity but because of the circumstances. Because of time. Because Amish and English don’t usually come together for such social reasons.

We’ve devised such intricate rules.

We didn’t stay long. The rest of the Amish community stood far from us, speaking Dutch in hushed tones, pointing at Sarah. I assumed they were communicating about “the girl we heard about who was just like Tyler,” something of an enigma until you see a person with a craniofacial condition. Then you know. Then it’s real.

Marion asked if he could give us a hug before we left, promised to be in touch. I reciprocated his embrace, and he clapped me on the back, then turned to Ben for a hearty handshake. “Thanks for coming,” he said, eyes puffy and bloodshot. “You don’t know how much it means to me. To us.”

As we pulled out of the gravel driveway and onto a long, winding dirt road, Ben and I waved sullenly and rode in silence for the hour-plus drive home.

A serendipitous encounter

Nearly three years earlier, I sat in my OB/GYN’s office for yet another prenatal appointment. I felt bored and agitated at my situation: three kids in four years, practically living in this waiting room, memorizing the placement of every wall hanging and cherubic photo of a newborn.

Nicole sat across from me, and we locked eyes. “Jeannie, right?” she asked. I smiled. “Yes,” I said. “I haven’t seen you in decades!”

We laughed in unison, and I calculated when we last saw each other in person. It must’ve been in elementary school, eighth grade graduation maybe. “Twenty-five years,” I noted aloud, shaking my head. She raised her eyebrows.

I can’t recall what we said, probably small talk and pleasantries. It was only minutes, anyway, before either she or I was called back for our checkup.

I’d forgotten about this encounter until about two weeks later, when a Facebook notification popped up on my phone. It was a message from Nicole.

Hey, I’m in the hospital and I have a strange situation. While I was walking the hall of the postpartum unit, I passed an Amish man wearing a button that said, NEW DAD. I congratulated him, and he started crying. He told me his wife just had a baby with Apert syndrome, and they didn’t know what to do. That’s when I remembered what you said at the doctor’s office—about Sarah having Apert syndrome—and I asked if he’d like to connect with you. Would it be okay to give him your number?

I responded yes, of course, absolutely.

Later that day, I received a call. “Hi, my name is Marion,” I heard on the other end of the line, though his voice echoed through the phone. “You’re on speaker so my wife can hear. Is that okay?”

“Hi, Marion. I’m Jeannie. Sure, no problem. How can I help you out?”

“Well, your friend told me you have a daughter with Apert syndrome. Our son Tyler was born with the same diagnosis. We are so overwhelmed and don’t know what to do, so I thought maybe you could help us.”

My mind flashed to Sarah’s birth, when Ben and I huddled in my recovery room, weeping together. We were scared, without support, and knew no one who could walk us through the characteristics of Apert syndrome—what to expect, what to do next. To be in a position where I could assist and possibly comfort another family who needed what I never had meant something to me. I felt gratified to help, eager to do so.

I mostly listened to Marion, who cried in between his frenetic description of Tyler’s whirlwind birth, the shock of his diagnosis, the way Tyler was whisked to the NICU. “It’s his lungs,” Marion said. “And then…the surgeries. How many are there?”

I walked him through Apert Syndrome 101, careful to only answer his questions and avoid overwhelming him and his wife with more information than what they needed or wanted. Finally, I told him of an organization that offers financial assistance and connects craniofacial families—Children’s Craniofacial Association, or CCA for short—and said, “Call me anytime, Marion. I’m here for whatever you and Jolene need. Just take care of yourselves. Please don’t forget that.”

Death lives inside us all, and it calls us when it chooses to

Marion called me from time to time after that initial encounter. Sometimes he’d text me photos of Tyler and request to see some of Sarah. Mostly, he pressed that he wanted our families to meet in person—for a picnic in the summer, a barbecue in the fall, over wood-fired pizza in their backyard in winter. I agreed every time, following up with, “Just let me know some dates, Marion. I know you’ve got a lot going on right now, but when you get a chance, let me know when you’re available so we can meet up with you.”

That meeting never happened. The one and only time I met Marion and his family was to pay homage to Tyler’s life and his battle. It was to say hello and goodbye, I knew that. Apert syndrome snatches chances for cookouts and picnics. It surprises you with its entrance, and it stupefies you when it decides to exit, too. And there is only one way out: death.

When Sarah was born, I wondered about that. It was my first cohesive thought: Will she die from this? And in the months and years following, I learned of many, many Apert-related deaths: a healthy eighteen-month-old girl who died in her sleep; an eight-year-old boy who died during surgery, another who died of complications after a surgery. A few made it to old age, but not many.

And there are always surgeries, usually in the first three years. Major ones, like cranial vault reconstruction, or opening up the prematurely hardened skull so that the brain has room to grow. Or syndactyly release, which is separating fingers (and sometimes toes) in order for fine motor skills to develop on par with their typical peers.

I knew that’s why Marion never got around to picking out a day and time for our families to meet. Still, the day five years ago when I observed Tyler’s placid expression, I saw a flash of my daughter, and it terrified me. Those endearing Apert features: large eyes, small nose, oblong forehead, little hands with short digits.

That’s when I noticed that death lives inside us all, and it calls when it chooses to.

The best I could do was go home, unbuckle Sarah from her safety belt, shuffle all five kids inside, and go about our day. I would answer her inevitable questions. I would read her a bedtime story. I would help her brush her teeth.

And, if we are fortunate, we will do the same again tomorrow.

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