Dear Wolf-Hirschhorn Syndrome

Dear Wolf-Hirschhorn Syndrome,

I’ve known you about four and a half years. You came three months after my daughter, or at least my knowledge of you did. In truth, I’d carried you just as I’d carried her, a fact that boggles me because it means I simultaneously held inside my body something I would love and something I would hate. On this, the eve of your Awareness Day (April 16), I’ve come to talk about our relationship.

Screenshot 2016-04-15 21.51.23

Original artwork by Miranda Thomas. The word collage has a black background. Inside a rainbow oval are these words in blue: “United: 4p- Support Group.” Other words (“sweet,” “unstoppable,” “fearless,” “smart,”) are painted on the outside of the oval.

I don’t hate you. I know I used to. First off, I didn’t like that your name came with a fanged snarl at the first syllable and a sloppy set of R’s at the second and third. I’m sorry to say, Wolf-Hirschhorn, but you have an unpoetic name.

But most of all, I didn’t like that your presence erased what I’d envisioned for my kid. When I was bouncing a seven-pound baby across the length of my forearm (her grapefruit-sized head in my palm, her butt in the crook of my elbow) I thought you were a thief. I thought you’d stolen something from my daughter. Snuck in and took 120 genes along with all kinds of abilities. The ability to easily swallow, the ability to sit up at the standard age, the ability to gain substantial weight, to talk or walk when the charts said, probably the ability to ever live alone. Possibly (we worried) the ability to live at all.

A fact of you: 1 of 3 die before age 2. At least that’s what researchers say.

I read that statistic when I found you on the internet, where you used the words “mentally retarded.” I found you in a Facebook group, and for two years I refused to “like” you. I found you in the handout the genetics doctor gave us along with a meek side-smile and an encouraging, “We’ll just wait and see how things progress.” Fuck you, I said when you tried to shake my hand.

That my infant daughter had sharp eyes which followed voices, that a nurse once said She seems high on the spectrum, that an ENT doc told us she was swallowing her own spit just fine and a kidney doc reported that she wasn’t refluxing her urine and an ophthalmologist said my girl’s eyes were the most perfect she’d seen all day—all of these, I considered a triumph over you. Take that, Wolf-Hirschhorn. My kid is different. My kid does not belong to your tyranny.

Fact of you: 93% have seizures.

When you brought the first seizure, a five-minute grand mal in the middle of the night, you asked me, Can you hear me now?

When I carted my eight-or-so pound baby to the ambulance, my silence on that cold, dark walk was my way of saying, I can hear you.

Five months after that first seizure, we—you, me, my daughter, my husband—went to a conference, all in your name. I met dozens of people who lived with you too. There was an adolescent boy who ran this way and that while his father kept calling his name. There was a teenage girl in a wheelchair with long, lustrous hair like a shampoo model’s, who loved to finger sparkly plastic beads. (She gave my girl a hot-pink strand, and we still have it.) There was a nonverbal man in a wheelchair who laughed heartily when someone mentioned nocturnal emissions. There was a woman with a faithful smile who carried a speech device around her neck so she could talk to people. There were many, many other people. There were also a lot of babies, babies whose faces looked like my child’s, babies whose parents held deep, worried question marks in the irises of their eyes as they wondered what their infant’s future would become.

And this is probably when I realized something about people who live with you, Wolf-Hirschhorn Syndrome. It’s going to sound stupid and positively un-ground-breaking, but it rattled the earth for me in the best of ways. People who live with you are as varied as people who live without you. People who live with you are just that: people.

And yet, people who live with you also have some common tendencies, this much I have also learned. For one, you have made it incredibly hard for people to eat.

Fact of you: about half have g-tubes.

You cause a range of seizures. You cause kidney troubles. You can cause silent aspiration. You cause low-tone, which causes a pronation of feet, which means kids like mine wear orthotics. You cause something about the myelination in the brain, which at this moment I forget. You also create people who tend to like music, who can clap to a beat. You create people who often love the faces of strangers, who are eager to make eye contact or in some way connect with others, and who cross their legs high at the thigh when sitting in a chair. You also usually create very small people, which means my daughter just ate a 350-calorie breakfast this morning (two eggs over easy on whole grain toast with a spread of cream cheese), and she might even eat another breakfast when she gets to school (rice krispies with milk), and at lunch she will eat more (I’m told by her teachers) than any of her peers, and yet she weighs only 20 pounds.

I used to sweat her weight. I used to count her calories and stretch her infant body along a yard stick and wonder if she’d “catch up.”

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Baby Fiona in a pink onesie and red socks, looking wide- and onyx-eyed. She’s probably about 5 pounds here, and she’s held up against a man’s green-shirted torso (her father’s). His left hand wraps around her entire torso. His right hand holds her butt so she’s upright.

But you know what, Wolf-Hirschhorn? My daughter’s small size doesn’t bother me anymore. Because my relationship to you has changed. To understand our relationship now, I have to tell you a Zen parable. I’m sorry. Bear with me. It’s a good one. I think you’ll like it. It goes like this….

A farmer had a horse that got loose and ran away. Too bad! his neighbors said. Terrible luck. The farmer replied, Good or bad, hard to say.

Then the horse returned with a few more wild horses. How amazing! the farmer’s neighbors said. You have great luck! But the farmer only replied, Good or bad, hard to say.

The next day, the farmer’s son rode one of the wild horses, fell off, and broke his leg. Aw, how unfortunate, his neighbors said. Good or bad, the farmer said. Hard to say.

A day later, military officials charged through town, taking sons for the army. When the officials spotted the farmer’s son with the broken limb, they passed. Weeping for their own losses, the neighbors said, What good fortune you have. How lucky. And by now, you know the farmer’s reply. Good or bad, hard to say.

I’m no Zen master, but my takeaway from this story has always been this: the goodness or badness of a situation is not the point. Drop the story of good or bad.

Wolf-Hirschhorn Syndrome, I’m not quite sure when it happened, but it did. I stopped hating you.

Maybe it happened when I thought about where exactly chromosomes are found inside the body, and learned they are present in every single cell of my daughter.

Maybe it happened when I looked up how many cells are inside a human body (current estimate: 37 trillion), and realized that there are trillions of instances of you inside my girl, that you are more present to her body than the color of her eyes or her affinity for Elmo. That you are inseparable from her. That you are at the very ground of her being. That you are as much the enemy as gravity, as oxygen, as carbon.

Maybe it was when I thought of you as absence more than presence. You are defined by what is missing: in this case, the white cotton-top of chromosome four. And how could I fault you for being nothing?

Somewhere in there, I became a mother who stopped wishing her daughter would be otherwise. I became a mother who embraced the body that her kid had been given.

Everyday, I do what any other mother does: I offer love to my kid’s body. I wash her back, asymmetrical from scoliosis, in the bath at nights. I slip her tiny feet into her orthotics in the morning. I comb her hair and she cries and I tell her I have to do it anyway because knots. When she squeezes her hand together and says “Uhmuh,” I scoop her up, cradle all twenty pounds of her, and pretend to offer her what she signed for: milk. And you, Wolf-Hirschhorn Syndrome, are always there, inside her body, somehow receiving my love.

Good or bad? Hard to say.

There are still things I hate about you. Seizures, for one. Non-verbalness, another. My girl has things to say, and very limited ways to say them. I don’t like you for that. I don’t like the barrier you sometimes place between my daughter and the world.

But other times, the barrier is the world’s doing, not yours.

So, Wolf-Hirschhorn Syndrome, Happy Awareness Day. I’m glad my husband and I are aware of you. I’m glad we live in an era where scientists can see chromosomes and analyze them and learn about who you are. I’m glad we don’t live in an era where bodily difference is a mystery we pin on mystical forces or karma or past sins. I’m glad my family has a name for you, and because of that name, a larger tribe of people who know you too, who have become our extended family.

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Sincerely,

Heather

(Readers: for more info on that extended family, check out this video. If you want to show your support for Fiona and other people with Wolf-Hirschhorn Syndrome / 4p-, feel free to wear jeans [for genes] or blue tomorrow.)

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2 thoughts on “Dear Wolf-Hirschhorn Syndrome

  1. Girl you are something ! you said some things that I have wanted to say to others but haven’t so I Thank you for that ! Hope we get to see you in California ! Give your sweet , Beautiful, smart, loving, girl a hug from Skyler and I !

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