Our commonality is the language of love.

Everyone is more than the sum of their parts. We are human, we are whole.

A group photo of the people with Apert syndrome present at the CCA retreat. I took this with my camera. Sarah is in the front row, second from the right. June 2023

For the audio version of this essay, please click on the link below:

Ben pulled up to the concierge check-in at the hotel in downtown Minneapolis. Our three girls squirmed in the back of the van, bubbling with excitement. We’d just arrived at our first Children’s Craniofacial Association (CCA) family retreat in almost ten years.

While we waited for Ben to secure our room key and give us the green light to unload our luggage, I slunk into the passenger’s seat, deflated after twelve hours on the road. It was late June, and I spotted vacationers peppering the city streets. There were Swifties (Taylor Swift was in town performing); swarms of dancers gathering for a national competition; Pride festival attendees; members of the Kiwanis Club; a meeting for the Deaf.

The melange of people captivated my attention. Especially because our group didn’t stand out, for once. Those with craniofacial conditions mingled among the rest. For once, I did not feel a need to fortress my daughter, because she was one of many in a diverse group of people.

Finally, Ben swung the driver’s door open, grinning. “We can go up to our room now!”

The girls squealed, each pelting me with questions.

Felicity: “Can we go swimming?”

Sarah: “When can I meet the other people who look like me?”

Veronica: “What are we having for dinner?”

We sauntered into the lobby, which was filled with the craniofacial community. I didn’t know any of them, but once they noticed Sarah, they waved at us. I could tell you exactly who had Apert syndrome, Treacher Collins, Pfeiffer. I could point out exactly what facial features signified each condition. I felt awkward and flooded standing in a large space with people who weren’t like us, yet were.

Usually, I forget that Sarah looks different. In our everyday life, she’s just Sarah. I don’t pay attention to how startling she might appear to others who have never been exposed to a person with Apert syndrome. I’m used to who Sarah is and how she looks. But to be in the midst of hundreds of craniofacial families felt, well, uncomfortable. We were in the spotlight. They were in the spotlight.

My preference is to stay in the shadows, not create a stir. Just smile, maybe wave and nod. Say hello. Then keep walking. I don’t want to make small talk, because everyone with Apert is a glaring reminder that those of us touched by the diagnosis aren’t like most of society. We can’t be. We are set apart in a way that isn’t glamorizing or affirming.

After exchanging cursory greetings with the other CCA families, I was relieved to retreat in the cocoon of our adjoining hotel rooms. That gnawing sense of shame crept up again. Why did I suddenly not want to be here? Why was I embarrassed to be here? I believed I’d dealt with all of this, when Sarah was young. But maybe all I’d done was repress the intensity of such awful thoughts.

We met a family from California, whom I’d only ever interacted with through Facebook in years past. The Donatellis were warm, conversational. We’d landed upon our safe, soft place with them, and their boys ran circles around our legs while we made introductions over a meal. Their son, Bennett, is around Sarah’s age and also has Apert. The two of them grinned shyly as they filled their plates with chicken nuggets.

After dinner, Ben and I dropped off the girls at a kids’ supervised activity while we headed to the bar for the adult meet-n-greet. Ben, in his redneck way, had filled two empty plastic water bottles with wine he’d brought from home. “It’s better than paying six dollars for a measly pour,” he shrugged, handing me my share. I was mortified.

What will people think?

That’s always the bottom line for me: what other people think. Not the fact that we can be ourselves, unabashedly, even if it means I’m holding a plastic water bottle filled with wine. I don’t have to fit in with the crowd who’s standing in a line snaked around the entire restaurant just so they can purchase their alcohol in standard glassware.

Sarah can be who she is here, I reminded myself. And so can I. For the first time in years, I am in the trenches with other parents who live the same life I do, who traipse their kids from one specialist to another, who prep for surgeries and nurse wounds post-op. They tend to emotional cuts and bruises, too: the vile insults and cruel stares from passersby, the rejections on the playground, the nicknames of “Frankenstein” and “Witch” from other kids.

While milling about in the bar area, a couple from Michigan approached us and introduced themselves. I’m not sure what drew them to us, since we were surrounded by dozens of parents, many of whom were already well acquainted. I suppose it was obvious that Ben and I didn’t really have an in-group, were just hovering around to get away for an hour.

We ended up tagging along with the Aylwards during the retreat, too. Often, the Donatellis would join us. We shared stories, vented about the bureaucracy of the health care system, shed tears. We politely excused ourselves when we felt drained, overwhelmed by the emotional intensity, or overstimulated.

Me (left) with Mary Donatelli (in back, standing) and Lisa Aylward (right of me). Sarah’s photo bombing in the background. Minneapolis, MN - June 2023.

Everyone understood the need for space, for room to catch our breath, for silence.

Many of our craniofacial community has comorbid conditions, like autism and ADD/ADHD. Some have hearing loss, speech impairments, physical limitations. I was struck by my privilege as an able-bodied person, ashamed that I seldom pay attention to how our environment is structured for those who can walk, see, and hear.

The admission of this changed my perspective from egocentric to other-oriented. At the group photo, all several hundred of us were escorted to a confined area of the hotel, herded into groups according to diagnosis. It was loud, stifling, chaotic. Body heat combined with poor air circulation escalated people’s moods. I saw a family rubbing a boy’s back who was rocking back and forth, whimpering. He had headphones on. I suspected he was autistic.

I mazed through the crowds, pausing when I noticed panic in someone’s eyes, their labored breath, the disorientation of their body. I put my hand on Helen’s shoulder and asked, “How are you feeling? Do you need anything right now?” She took a breath, nodded, said, “I’m autistic, but I’m okay. It’s just really loud right now.” I stood with her, my hand on her shoulder, and said, “It is very overwhelming. There is some room down the hall if you need a break.” She thanked me.

I did this with others until I stumbled upon Sarah in the Apert group, then craned my neck above the towering heads until she caught my frantic waving. Once our family convened to the hallway, I suggested a regroup. “And swimming!” Veronica added. I chuckled. “And swimming.”

It’s good to be here, but it’s good to take time to soak it all in, I thought. Literally, I guess.

Andrew Leland

wrote about the experience of living with a disability in his stellar Pulitzer-nominated memoir, The Country of the Blind. I reflected on his words when the retreat had ended:

I remember the realization I had under sleep shades: even in total darkness, I was still myself. I went on. This is something blind people have said (but really shouldn’t have to), over and over, to the sighted world around us: we’re still people. We don’t see, or see very well, but aside from that, we’re just like you. The failure to appreciate this basic fact, that someone’s difference does nothing to alter their humanity, is the wellspring of all discrimination, alienation, and oppression.¹

We are all still ourselves, no matter the social context. Differences don’t make people outliers, but somehow we have ostracized some who don’t look or act or move like the rest of us. We have “othered” them, split people into categories of us and them. I wonder what our culture would look like if we recognized ourselves in all of humanity, if we returned to a sense of lost dignity and resurrected basic principles of inclusion, equity, even communion.

Regardless of race or creed or gender or diagnosis, each of us is more than a sum of our parts. Everyone is whole, worthy, and members of the same family: humanity. Our commonality, I’ve learned from being Sarah’s mom, is the language of love. And that’s the only language I aim to speak from now on.

1. Leland, Andrew. The Country of the Blind: A Memoir at the End of Sight (Penguin Press: NY, 2023), 289.