"Love, not intelligence, makes us human."

Tell everyone, "You're somebody."

Sarah as a baby on Valentine’s Day, 2014

For the audio version of this essay, please click here:

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I crooked my arm and Sarah nestled into its warmth and steadiness. We’d been home from the hospital for one week after her dramatic birth, and I couldn’t stop crying every time I looked at her. That face—its asymmetrical features, the peeling flakes of cradle cap, the baby acne, the scrunched up nose and bulging eyes—wasn’t what a newborn was supposed to look like.

She slept, swaddled in a fleece blanket, while I rocked her on my perch on the corner of our family room couch. We were bathed in midday sunlight that streamed from the floor-to-ceiling windows. Sarah and I were alone while the rest of the world sat behind desks in classrooms or office buildings.

It was during times like these when I allowed myself to cry. To weep without restraint. To allow those hot, fat tears wash over my face and hands. It was grief and fear I released through them—grief that Sarah was not born a typical baby, and fear that I did not love her the way a mother should.

After twenty minutes or so, Sarah’s eyes fluttered open. She peered at me, and my gaze met hers. Those royal blue irises large and soft as doe eyes. I couldn’t resist them. Sarah pierced my heart in a way that felt unfamiliar to me. It was love she exuded. She spoke to me through that moment, conveyed a desperation for me to love her as she loved me, to need her as she needed me, to want her as she wanted me.

And I did.

I whispered to her, “Do you have a good brain in there, little one?” She smiled and cooed in reply. I wanted to believe there would be no cognitive deficits present, though I was skeptical, only because, well, anything goes with Apert syndrome. What I’d read said that most people diagnosed with Apert have an average I.Q. at best, some teetering below 90.

“I can handle your surgeries,” I said, as I stroked her cheek, “but I don’t know how to relate to someone I can’t talk to.”

Sarah kicked her legs and giggled. In this way, she was like every other baby I’d seen or held or met. To her, there was no difference between her and another newborn. Living inside her body and brain felt right, because it was. But I couldn’t accept it. I needed a quiet life, a “normal” life, though lately I questioned what normal meant.

I once thought normal meant to be like (I assumed) most other American families who travel every summer and get to spend their leisure time playing board games or hiking or sitting around the dining room table—not waiting for hours in medical facilities or nodding off in a stiff chair while nurses take vital signs on their medically fragile child post-operation.

Life couldn’t be like this. I wanted my kids to have an upbringing they would remember fondly, to have parents who weren’t beleaguered or haggard and bone weary.

A friend gave me a book called My Child My Gift: A Positive Response to Serious Prenatal Diagnosis by Madeline Nugent¹, but I shelved it immediately and couldn’t stand to even look at the title. I was angry, and I didn’t want to read some saccharine account of why God gives special children to special parents. I was not special. I was selfish for wanting to raise a typical child who didn’t need surgeries and therapies and specialists.

Something cracked inside me that day when Sarah pierced me with her love, though. I gingerly placed her in the baby swing and ambled to my bookshelf, compelled to open the pages of that book. And there it was, a line I’d never forget, even ten years later:

Love, not intelligence, makes us human.

Sarah hanging out in the backyard sandbox at about 18 months old, 2014

I thought Sarah needed to be smart in order for me to connect with her, but what I really needed was to love her. I needed to raise her to know she mattered, that she was important and valuable as she was, not as society—or I—wanted her to be.

There are far too many among us who have felt diminished by the expectations and pressures of others, who have stayed small to accommodate them, and who have thus become shadows of who they were meant to be.

I didn’t want that for Sarah. Or for myself. Or for anyone.

The tears that fell unbidden in that moment after reading those six profound words were cathartic. They did not contain the toxins of suppressed fear but instead the relief that I had a chance to show Sarah that her innate value had nothing to do with her appearance or her intelligence or her contributions to society.

The value of every human life lies within the mere fact that you and I exist. We are somebody. And that doesn’t mean we will be known and lauded by the world. But it means we can learn to appreciate and even embrace who we are inherently. We can foster a sense of worth in what we know to be true—that we are good, that what gives life meaning is to love and be loved.

With or without the ability to articulate lofty ideas, Sarah had a pure heart. I knew that. The power of a heart that reflects unconditional acceptance is, what I then realized, precisely what the world needed most. We don’t need more Rembrandts or Einsteins or Ghandis. We need Sarahs and Johns and Andys and Julies.

The world needs you, and what only you can give. The world needs me, too, and what only I can give.

Ordinary people can spark extraordinary change through small gestures of kindness. And I resolved that I would learn what it meant to live in this way by being Sarah’s mother—in responding to her by asking myself, “What would love have me do?”

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1. Now out of print, so I don’t have the exact page number for this quote, nor a link to where you can purchase the book, but I’m guessing you can search and find it at an online used book store, like ThriftBooks.