The Real Work of Parenting a Rare Girl

The therapists who saw my daughter with Wolf-Hirschhorn syndrome as ‘abnormal’ missed the light in her eyes—and a deep lesson about love

By Heather Lanier, WSJ, July 23, 2020

When I was first pregnant in 2011, I went above and beyond the prenatal guidelines to make what I thought was required of me: a perfect baby. I didn’t ingest a drop of caffeine, a tablet of ibuprofen or an ounce of soft cheese. I swallowed my vitamins and trained daily for an unmedicated birth. After 36 hours of labor, a midwife whisked my daughter away in concern.

My baby, Fiona, was born full-term yet weighed 4 pounds, 12 ounces. A red flag. The pediatrician said Fiona was either from “bad seed or bad soil.” He left, and I cried. A sandwich came. I tried to eat it.

The woman who came home from that hospital was not entirely me anymore. She was told that her baby was “abnormal,” and she knew that by “abnormal,” doctors also meant “wrong.” Back then, she thought that her mission was to love her baby out of that category. She believed in normal, and she believed that she and her child would reach it.

At four months old, Fiona still only weighed 7 pounds. Yet her alert, intense gaze weighed the world. My husband and I took her to a new pediatrician.

The doctor looked at my daughter’s face and said, “Her eyes are wide-set.” She listened to Fiona’s chest with a stethoscope and said, “She has a heart murmur.” She peeled back the tape on Fiona’s teensy newborn diaper and said, “She has a Y-shaped butt crease.”

When she handed Fiona back to me, the pediatrician said, “I suspect she has a syndrome of some kind.”

We didn’t know then that Wolf-Hirschhorn syndrome occurs in one in 50,000 births. Your odds of becoming a pro athlete are twice as good as your odds of having Wolf-Hirschhorn syndrome. A rare disease is one that affects fewer than five out of 10,000 people; Wolf-Hirschhorn syndrome is ultrarare.

When I went to the internet, it dealt me its cold, clinical blows.

Intellectual disabilities range from mild to severe…

Seizures occur in over 90% of children…

Mortality rate is estimated at 34% in the first two years of life.

It was 10 p.m. when I read this. The windows were black, and the ground cracked beneath me, and the computer glowed alien blue with its surreal news.

In the parenting culture of playgroups and story hours, the able-bodied babies were everywhere. They were giants. They were sturdy as small vehicles, their backs boxy and broad. They were wizards of muscle and mind.

They triggered my envy. Wolf-Hirschhorn syndrome is caused by a missing bit of material on the fourth chromosome. I wanted all of Fiona’s fourth chromosome. I imagined hunting each corner of the Earth for the missing bit. I imagined finding it in a Dali-esque sand dune among animal skulls. Or I imagined gathering up whatever I had that was valuable—my degrees, my publications, my health—and handing it all over to some guy behind an arcade prize counter and saying, “This stuff for that?” Behind him would be jars filled with genetic material.

But this is where my fantasy stopped. And so the real work of parenting began: loving my daughter, as she was. And rejecting the false virtue of “normal.”

The therapists who visited our house in Fiona’s first year brought milestone charts and pointed out all the ways Fiona wasn’t like typical babies. She wasn’t pushing up on her arms during tummy time like a five-month-old. She wasn’t sitting unsupported like a six-month-old. They bequeathed me a list of tasks and exercises, but they seemed disappointed by my daughter, as though a person’s life were measured by how “able-bodied” she could become.

They failed to see a curious, delighted, sometimes even trickster light in her eyes. Almost a year old, when other kids her age were toddling, Fiona lay on her back and peered mischievously at me. Then she tossed a ball over her shoulder. Then she rolled onto her belly, grabbed the ball and looked back at me intently. She didn’t care a lick about that ball. She was after connection: her mother’s eyes in hers, beaming.

We moved to Vermont when Fiona was 14 months old and assembled a new team of therapists. They perceived Fiona’s many delays, but they also saw her capabilities and intelligence. She said nothing more than “Ah” and “Mm,” but the speech therapist noted how she inflected those two sounds to mean a hundred things. Mom, I’m hungry. Mom, you’re hilarious. Mom, I’m tired of you.

They set lofty goals. The occupational therapist, Anne, intended to teach Fiona how to chew. Chew! The physical therapist, Rachel, noticed that Fiona didn’t have a fall reflex.

“She’ll need to be able to catch herself,” Rachel said, “when she stands and starts to walk.”

“You think she’ll walk?” I asked, because I couldn’t help myself.

“That is the goal,” Rachel said.

I learned to discard ‘normal’ and embrace ‘possible.’

“Presume competence,” said the disability advocates, and so I did. I learned to discard “normal” and embrace “possible.” It wasn’t easy. My daughter needed 10 times the support of a typical kid. It also felt like the truest, most human work I could do: to love someone into whomever they would become.

I was learning. Meanwhile, the evolutionary biologist Richard Dawkins tweeted that it was immoral for a pregnant woman to knowingly carry to term a child with Down syndrome because, according to him, disabilities decrease happiness and increase suffering. I was appalled.

When Fiona reached kindergarten in 2016, I fretted: Would her teachers think the same? That her life wasn’t “worth it”? At a standard public school, among kids twice her size, would she be dismissed as incapable, rejected as less-than?

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I couldn’t know that in one year, her gross motor confidence would climb. She’d saunter down the hall with the height of a 3-year-old and the confidence of a cool kid. In the winters, she’d attempt cross-country skiing during gym, where she’d learn in the snow what she already knew on regular ground: the art of falling over. I couldn’t know that in the company of typical, talking peers, my daughter’s verbal language would explode.

On her first day of kindergarten, I couldn’t know any of this—just as I couldn’t know that, on the day I learned of my daughter’s diagnosis, I was being handed a gift: the knowledge that the point of life isn’t to achieve things. It also isn’t, as Richard Dawkins implies, to avoid suffering. It isn’t even to “be happy.” A better life isn’t one that steers clear of the most pain, managing to arrive at the end with the eulogy, He had it easy, or She was the least scathed person I know. This belief in the virtue of the “happy” and suffering-free life sterilizes and shrinks us, minimizing what makes us most beautifully human.

The point of this human life, I believe, is love. And the ridiculous and brave and risky act of love turns my heart into taffy, stretches it across the broad spectrum of human feeling. I hurt, I long, I exalt, I rejoice. And yes, my chest sometimes aches from the work of raising a rare girl. But the ache in my chest is a cousin of joy.

—Ms. Lanier is the author, most recently, of “Raising a Rare Girl: A Memoir” (Penguin Press), from which this essay is adapted.

This article first appeared HERE.