In a Sheraton suite in Indianapolis, I swiped my daughter’s cheek ten times with a cotton swab that a technician then dipped in a blue solution and sealed for the labs. Scientists would examine the cells of my daughter’s cheek, look closely at all the chromosomes, map the genes as best they could, and tell us how big her deletion was and what she was missing. How big, what was missing? I didn’t really care. The results would’t tell us much yet, not until the field of genetics advanced.

My daughter is gorgeous and half the size of kids her age. She is ornery and a lover of dance music and incredibly delayed in walking, talking, eating, and more. No lab scientist would change her DNA. So the cotton swab was more for the doctors and the scientists who looked carefully at chromosomes and learned cool things about them and gave the genes names as meaningless to me as the numbers they assigned to distant stars.

What I cared about was our meeting with the geneticist. She asked if we had any questions, and I did. Though my daughter’s future is still a wide-open field of blooming, poppy-colored question marks, her past according to the field of genetics is clearer, and I wondered, as is my penchant, about that past. How did this happen? How did my daughter lose a tiny part of her fourth chromosome? We already knew it wasn’t inherited. So what happened to my daughter, Fiona? And I wasn’t settling for the simple answer I got from our doctor — that the deletion spontaneously occurred at the time of conception. No, I wanted a more thorough story of chromosomal deletions.

What Dr. Calhoun told me dramatically changed the way I see Fiona and all genetically inherited disabilities. And I don’t mean to oversell her answer, here, but it actually changed the way I see the entire diverse lot of human beings.

“Chromosomes don’t get passed down in their entirety,” she said, sitting humbly on a hotel bed while my husband and I occupied nice chairs. We were at a conference for kids with my daughter’s syndrome. “Your husband doesn’t have a whole chromosome from his great grandfather, for instance. He has bits of chromosome 1 from this person, and bits of another chromosome 1 from that person.”

Then Dr. Calhoun explained that, in order for my husband’s chromosome 1 to pull from a smorgasbord of ancestral chromosome 1’s, reproductive cells undergo a tricky little dance. I’d later learned that this is called meiosis, and that it’s a bit more complex than Dr. Calhoun explained to me. But this is the gist: at some point in the creation of reproductive cells that become sperm and egg, chromosome 1 from a person’s dad finds chromosome 1 from his mom, and chromosome 2 finds chromosome 2, and onward. Each corresponding chromosomal pair now does a little intertwining dance. Dr. Calhoun raised her two index fingers, stuck them together, and wrapped them around one another like snakes. They get tangled. They get stuck together. And then, in biological craziness, they rip apart.

That’s what Dr. Calhoun told me: “They rip apart!”

“You can already see the issue, right?” she asked with wide eyes. And I nodded vigorously. I knew where she was going: anytime they rip apart, there’s risk that a chromosome will have too little of what it needs, or too much.

I was shocked. Every human on the planet was a result of this makeshift process of creating? It seemed like a miracle we were all mostly symmetrical beings. What a bold move on nature’s part. What dice-rolling. What — some would say — ballsiness.

Why be so messy? Why not just keep the chromosomes whole? This is where things get really cool, at least to a nerd like me. Because the process maximizes diversity.  So that each person is 100% unique. So no two are alike. So some of us are immune to lethal plagues. So some of us are tall, short, fast, slow, good with numbers, allergic to wheat, nonverbal, uber-social, flatulent, fierce, whatever it is. Biology wants a wild mix.

I sat there in a suite on the 11th floor of a Sheraton, my mouth hanging open, knowing that Dr. Calhoun didn’t have a clue as to how this bit of information was blowing my mind. I was ah-mazed.

Fiona’s now two and a half, so I don’t have the anguish of what-ifs that I had in her first year of life, but that’s partly due to Doctor Calhoun’s words. During her first year, I’d sometimes wondered if I was to blame for her syndrome. Why did I encourage us to start trying for a baby a month before we’d originally planned? If we’d just waited another month, maybe Fiona wouldn’t have Wolf-Hirschhorn Syndrome. Then again, we probably wouldn’t have a Fiona. We’d have another person. And I love Fiona. So that logic gets screwy. But my brain went there regardless — the “What if I had done things differently” train. The “I have control over the universe and so I am to blame” train.

This track isn’t useful and I’d often talked myself off it. I know the clichés, and they are of course true: Fiona is a gift. Fiona is perfect as she is. Fiona’s “imperfection” is only a subjective perspective of the able-bodied worldview that fails to see the value of her giggle-laden life. Yes and yes and yes.

But when Dr. Calhoun explained the sticky, rip-apart mechanics of new chromosome creation, the stubborn remnants of self-blame that I’d done my best to weed out dried up completely. I was not to blame for Wolf-Hirschhorn Syndrome. If anyone was responsible, it was biology and its need for “diversity,” and who could blame diversity, with its wild spontaneity and intrigue, with its variation and uniqueness and artfulness. With its Muppet-Show assortment of tall and short and brown and beige and fat and skinny and blond and brunette and gay and straight and introverted and extroverted and on and on and on.

It was a golden moment. An eye-opener. I can still see Dr. Calhoun’s two index fingers mock intertwining, and then untangling again.

And then she explained that, actually, we all probably have deletions. Miniscule, benign deletions. But there’s so much redundancy in the genes that it usually doesn’t matter. Fiona’s matter. Fiona’s are visible when someone smashes her cells and sorts through the ramen-shaped chromosomes and notices that, oh look, right there, one chromosome 4 is missing its little cotton ball on top.

So now, after our meeting in a Sheraton suite with Dr. Amy Calhoun, I think this: Fiona is a work of art brought on by a dubious method of creation. And as a creator myself — a writer — I’m pretty used to methods of creation being somewhat haphazard. The overly wrought third draft of a chapter after months of slaving away at the computer. The inspired, streamlined first draft of a poem scrapped together on a napkin in a bathroom stall. It’s not my fault that Fiona is missing the cotton ball top on one of her chromosome 4’s. It’s due to the gorgeous risk of creation. And in some ways I feel like we’re all kind of indebted to it, and therefore to her.

Fiona, Age 2.5

Fiona, Age 2.5

This was not quite two years ago, and the summer Olympics had just aired, just as the winter Olympics aired recently. That night in our conference hotel room, my husband and I watched the sculpted, muscular, super-able-bodied athletes, the swimmers and runners and divers, each going to their bodies’ limits, each exerting impressive strength and speed, some even going faster and stronger than any body had on the planet. And because of Dr. Calhoun’s words, I saw each of them as a part of a larger equation that Fiona is a part of, too. I saw that all of them — all people — needed each other to complete this equation. It was the same equation that created Einstein and your great Aunt Haddie and the world’s gold medalist and the silver medalist and Fiona and me and you.

{A version of this post originally appeared at}

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