How Florence + The Machine Gave Me My Mantra

Tonight, I check my Facebook feed to learn that not one, not two, but three of Fiona’s Wolf-Hirschhorn Syndrome peers are in the hospital.

Yesterday, it was two others.

This is not uncommon. I’m Facebook friends with many parents of kids with Fiona’s genetic deletion, and pretty regularly, somebody reports that his or her child is in the hospital. Photos show kids head-wrapped in gauze and getting EEG’s, or curled up and sleeping in a hospital crib, or sometimes standing by the hospital room door, looking into the busy hallway of nurses. With the latter, the photographer reports that the family’s just waiting on a discharge. Can’t wait to get home. And we all cheer, virtually, when someone reports, “Finally home!”

And then the next day, another spat of seizures for another kid. Another bout of pneumonia for another kid. Needless to say, my heart always breaks for them. I know that on a few occasions, it has been us, and it could be us in the future.

A line from a song has become a mantra for my life as Fiona’s mother. The line’s from “Rabbit Hole,” by Florence + the Machine. “This is a gift,” Florence sings. “It comes with a price.”

I started running to the song, early on.  When I say “early on,” I mean in the first few months of learning Fiona’s diagnosis. It’s a strange statement, early on, because it refers to the fourth month of Fiona’s life, and yet her genetic condition was present at the mustard seed start of her existence, through twelve weeks of nausea, a second trimester of relative energy and an adorable baby bump, a subsequent third trimester of more nausea and an expanding bullet belly. Always there, beneath the empire belted tops and elastic waist pants was not only Fiona, with her beauty and light and delight, with her ten fingers and her ten toes burgeoning or webbed or fully formed, but also her missing genetic material. The thing that would make cells carve her heart a little different; her brain a little different; her spine a little different. Even her nails would grow a little different. It was always there.

But the world changed after that diagnosis, in small and large ways. Any vision of my child’s future got wiped clean as a slate. Walking? Not a given. Speaking words? Also not a given. And much, much more. Many things became, not just questions but now improbabilities. I won’t list them because to list them is to make them seem more permanent, more fixed in this world, and I like to believe Fiona can surprise us, but suffice it to say, I no longer envision my child’s future as most parents can, as I did when I was pregnant with her. So many things changed for me after that diagnosis.

In the category of the small changes, the Jay Z and Kanye West hits of my usual treadmill runs were suddenly too vacant. Too shallow. I needed someone who was singing her heart out. Who was laying it bear to the beat of heavy drums, so I could pound away on the treadmill and, if need be, cry at near sprinting speed. Florence + The Machine it was.

And I stumbled upon “Rabbit Hole,” which opening I didn’t even like. But eventually Florence sings it again and again.

This is a gift.

 It comes with a price.

At first, the lyric was a single bell note ringing in my running ear. Especially the first half. This is a gift. At the time, I was processing the geneticist’s words. I was preparing myself for swallow studies and kidney ultrasounds. I was raring to learn whether my daughter could even handle her own saliva without silently and slowly choking herself with it. I felt like I was in a private little hell.

This is a gift.

Indeed, the “price” part was apparent. But the gift part, I couldn’t always sense. Not “early on.” This is a gift, Heather. And not in the “pain makes you stronger” kind of way. But simply that she, my daughter was a gift. This little girl was a gift. Don’t let her genetic deletion make you ever forget that, at her core, and through all her layers, she is a gift. I came home sweaty after my run, and she let out little bubble bursts of infant giggles. And then scowled at my salty skin when I tried to nurse her. Which made me laugh.

Now the lyric pops into my head regularly. Sometimes only one half pops into my head. Then the other half follows.

This is a gift.

Her thumb on her upper gums, awakening her mouth to its sounds, and she sings a primitive melody of o’s and a’s and v’s. Ova, Ava, Ahh. Her twinkling blue eyes and dimpled cheeks when she smiles as I shake my overgrown hair. Her gasps and squeals and shouts of glee when I bounce her up and down on the yoga ball. Her evident and immediate joy at any person’s attempts at a dance move.

But then she refuses to drink the bottle I’ve made, and I know what the scale read at the last doctor’s visit and feel in her bones the lightness, the sense that she’s gained maybe nothing in the past few weeks. Or the geneticist says, Yes, that scoliosis looks significant, and I dwell on it, the word significant. A monument is significant. A crater is significant. My baby’s spinal anomaly is also significant?

It comes with a price.

Tonight, the price is most pronounced in other peoples’ lives. In the parents and the kids who are once again sitting in the ER.

Tonight, the Laniers will all sleep in their own beds. This is a gift.

Fiona’s bed is a co-sleeper right beside ours, so that we can listen for changes in her breathing just in case she has a seizure. Almost once a night, one of us, my husband or I, jolts up at the sound of stuttered breathing, looks into her bed with a surge of adrenalin only to see that, no, she’s not seizing. Then we try to calm ourselves back to sleep.

It comes with a price.

The mantra soothes me. The one statement flows into the other. It’s a wheel. They don’t need each other—I don’t feel I need to pay for the gift of Fiona. And I don’t feel the price owes me the gift. But they do exist together. When I dwell too long on the price of this life—the hours and co-pays spent at doctors offices, for instance, and in therapy appointments and with medical tests—I remind myself: this is a gift. I remind myself to adore her cockatoo hair-do and her new penchant for bouncing in a supported stand. This—all of this—is a gift.

And when I’m riding steadily a wave of stability, when I almost forget about missing genetic material and when she’s on a roll with eating and growing and learning a new thing or two, and then all the sudden I wipeout in the sand because of some fresh concern, another test she needs, another unexplained fever which might bring on a seizure . . . Ahh, there it is. The price.

Leading always to the first. Reminding me again and again of the first. Even through the fog of interrupted sleep: the flutter of her feet when she kicks excitedly in the highchair, the L-shape she folds into in sleep, her small heart pressed against mine in the infant carrier, her eyes following her dad as he dances across the kitchen: This is a gift.

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3 thoughts on “How Florence + The Machine Gave Me My Mantra

  1. Fiona is indeed a gift and with the gift of wonderful parents who will support and encourage her I am sure that she will achieve great things. I still sometimes have to check on Clare during the night if I haven’t heard her wandering about and she is 21!

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