"I'm thankful Sarah looks different and I want everyone to love her."

Our truest self reflects a return to childlike innocence.

Joey on his fifth birthday (1/20/2024)

The seven of us huddled in our living room. It was evening, shortly after the new year began, and Ben and I decided we’d take fifteen minutes as a family for prayer. The girls were accustomed to this nightly ritual, but the boys were not. At ages five and (almost) four, we decided it was time to teach them about the importance of gratitude and compassion. Hence, the reason we do a round robin to each voice one thing we are thankful for and one thing we’d like to pray for.

Joey’s turn came next-to-last, right before Auggie’s. He fiddled with the sparkly rosary beads in his hands, unsure of what to do with them. I looked at him and asked, “Joey, what would you like to say? One thing you are thankful for and one thing to pray for.” Without hesitating, he turned to Sarah and said, “I am grateful Sarah looks different, and I want to pray that everyone in the world will love her.”

We’d never spoken to Joey with specificity about Sarah’s Apert syndrome. I guess I didn’t try to explain it, because I didn’t know how. How do you tell a five-year-old that his sister was born with a rare craniofacial condition, a genetic anomaly that would affect her entire life, and his? On occasion, I might say, “Everyone is different, and being different is a good thing.”

Once, Joey spoke unexpectedly while we were gathered as a family for dinner. “Mom, why do Sarah’s hands look different than ours?” Sarah was present and becoming keenly aware of the ways in which her features stood out from the rest of us and from the rest of her immediate circle of friends. I knew she was feeling tender about this topic, because she had approached me in tears not long before Joey asked this question, inquiring, “Why do I have to have Apert syndrome and no one else in the family does? Why do I have to be the one who looks this way?”

I didn’t have an answer for her —not then, not now. What I did was cradle her in my arms, stroke her hair, and whisper, “I don’t know, Sarah. Sometimes we just don’t understand some things that happen in this life.”

Before answering Joey at the dinner table, I paused to glance at Sarah, gauging her for a reaction. She stiffened, clanked her fork on her plate, slumped her shoulders, and sighed. I decided to ask her if she wanted to answer Joey directly. “Sarah, would you like to tell Joey why your hands look different, or would you rather I talk to him about it later?” Sometimes she was embarrassed to discuss her diagnosis in front of even the family, but sometimes she was okay with it. That night, she was okay with it.

She turned to Joey and said plainly, “I was born this way. I just look different, because it was how I was born.”

The answer sufficed for him, and he promptly changed the subject back to whatever new matchbox car he’d purchased with the coins he earned for good behavior (plus accompanying sound effects). Sarah remained subdued the remainder of the meal, but I didn’t push anything. Later, I asked her privately how she felt about what happened. She began to cry, then rail, “Why did Joey have to make fun of my hands? Why does everyone have to say something about the way I look? Do I have baby hands? Remember the boy who told me I had baby hands?”

I placed my hands squarely on her shoulders, made eye contact, and said, “Sarah, Joey is your brother and he loves you. He is still young, and he’s not asking these questions to make fun of you. He’s asking, because he really wants to understand.” She sniffled, wiped her nose with her shirt sleeve (because: no Kleenex around), and slowly nodded. I asked her if she wanted a hug, and she said yes. With that, she perked up, and we moved through our evening routine.

Moments like these are never easy. I think there are a lot of parenting moments that catch us off guard. No one is prepared for the hard questions. I remember when I was pregnant with Felicity, I devoured every preparatory book available at the time: the What to Expect series, Breastfeeding Made Simple, Healthy Sleep Habits Happy Child. But there are no manuals that offer a Q and A about when your child asks why her face looks different and by the way, is she ugly?

So what do you do in these cases? You give the honest answer in the kindest way. And you keep it simple until they are old enough to handle the more complex, abstract, and nuanced conversations.

I guess Joey internalized that momentary exchange at the dinner table. Or maybe it was far more than that. Maybe he’s been observing our family milieu his entire life, and he only then —when I asked him what he was thankful for —decided he knew how to put words into what was in his heart, to say he was grateful for Sarah and that he wished everyone would love her. I think what he meant was that he’s aware that Sarah isn’t like anyone else he knows, but he wants to elevate her differences as being good, because they are, and she is. Good, that is. And he wants the whole world to appreciate and value Sarah for her goodness.

How could such a message be better conveyed? In all the thousands of hours I have spent in my lifetime journaling my thoughts, piecing together ideas, offering insights into what I’ve experienced, and making an attempt to universalize what I have come to understand for the sake of others who might relate, I remain inept at speaking —or writing —so powerfully, like a child.

I am beginning to understand what Rick Rubin meant in his book, The Creative Act, when he wrote that the greatest and most profound art emerges from a childlike soul. It is that return to innocence, that capability of noticing things and recognizing the profundity of simple observations that captivates the truest, purest aspect of our Self. That is where the Artist resides, in the Self, which remains untarnished by betrayal or exasperation or adult responsibilities and administrative tasks.

It’s true that most of us overthink and overcomplicate things. I do. But my children, in moments like these, bring me back somehow to what is right and true and good. They zero in on what matters most, the very things I forget about or fret over, by their unfiltered honesty. Whenever I brood about whether I have permanently screwed up my children because of my woundedness, something like this happens: one of the kids speaks from the heart, and I realize it has very little, if anything, to do with me. It’s coming from them.

To return to matters of the heart is to return to a state of openness —to both hear and receive what is heard, to accept what is, but to still imagine what is possible. And then to believe, with full confidence, that what is possible can happen. Joey’s love for Sarah, though it surprised me, demonstrated that each of us is good, no matter how we look or what we do. Sarah is good. I am good. And so are you.

Because we exist.