"Sixteen years ago, my daughter was born sick; unexpectedly and extremely sick. The fact that she's now well, and has been for over a decade, is something I'm still working to believe."

By Heather Harpham
September 28, 2017
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Heather Harpham and Daughter Gracie
Credit: David Kumin

We all want to protect our kids. The fact that we can't ever completely ensure their safety, their wellbeing, is equally self-evident. For most of us, it takes a while for this rotten, painful reality to set in; infants are so vulnerable, so without agency or plans of their own we can and do protect them in ways that feel absolute. But eventually, the truth sets in: if we're gods to our kids, we're demi-gods; gods with severely limited powers to throw the game in their favor.

Once, when I was about 13, I stayed up late, without permission, to watch a horror movie. When the movie ended, I crept into a downstairs bathroom to wash my face, alert to every sound. As I looked at my sudsy face in the mirror, a hand shot through a crack in the door and gripped me around the neck. Someone had me, literally, by the throat. Multiple things happened simultaneously: my step-brother pushed the bathroom door open to reveal himself, laughing hysterically; my dad's feet hit the floor above us and he began to pound downstairs; and I, hoping to keep my brother (and myself!) out of trouble, tried to suppress the scream already underway.

Logically, I understood that this was just a prank, physiologically, not so much: the scream would not be diverted or suppressed. It was as if my body could not catch up to reality. Once we've activated an internal alarm on that primal, limbic system level, winding it backwards is nearly impossible. At the very least, it takes time.

Sixteen years ago, my daughter was born sick; unexpectedly and extremely sick. Her illness felt as unanticipated and as menacing as a hand shooting through the bathroom door to grip your throat. The fact that she's now well, and has been for over a decade, is something I'm still working to believe, viscerally. Part of me is locked in the fear, the hypervigilance that came roaring to the surface in the hours after she was born, when we were transported at four a.m. by ambulance to a specialized Neonatal Intensive Care Unit, running every red light from Marin County to San Francisco.

And yet... she is now, and I really can't emphasize this enough (to myself), fine. Truly, undeniably fine. She is (for better or worse) a middle class American teenager, with all the attendant privileges and pitfalls. She has a smart phone that she is tethered to, she has a cat she loves fiercely. A brother. A mother and father. She's the picture of good health and in my maternal eyes a beauty with thick, dark hair that turned curly-ish in adolescence. And yet...

When my husband and I look at her, this is not the only girl we see. We also see a girl, not yet four, in a hospital bed. We see a wan baby, and a listless toddler. We see a fragile, pale child in a small white room, where a pediatric specialist will place an IV into her jugular vein. We see a girl in peril, an infant sick enough to jerk doctors out of their own lives and into emergency procedures.

There was a lot of that, and it went on for a long time.

She was born with a blood disease that left her incapable of producing or sustaining sufficient red cells to survive. She had to rely the kindness of strangers, blood donors, who month by month saved her life. This went on until the age of four when she was cured, full stop, with a bone marrow transplant made possible by stem cells from her new brother. She is now 16. This very minute she's probably twenty texts into a meme volley with her brother, or watching Star Trek with her dad, or plotting out her first book, or considering the relative acting skills of Allison Scagliotti as Claudia on Warehouse 13 vs. Mae Whitman as Amber in Parenthood. She has an intense love for stories with wildly swinging reversals of fate, like the one she enjoyed. And, she has startling powers of empathy; often when we watch a drama together, her insights into a character's interior world far outpace my own.

She's got this. This being life. And, she'd be the first one to tell you so. But try telling that to the back mind. It shrugs off evidence like confetti. It looks for ways to build a small, cozy, foam-padded courtyard around your kid for all eternity.

Because danger could be anywhere. Anywhere. In the wee hours when risk management dominates sleep, I categorize her threats, so as to shrink them, into three primary sources.

The Totally External – i.e. food poisoning secondary to calamari. Or creepy men on Metro North. Or speeders, on our block, who can't see her black sweatshirt as distinct from the night sky.

The Seemingly External – i.e. the impulse to pick a semi-sadistic someone to fall in love with, the impulse to re-create the drama that was the hallmark of her early childhood via a messy work life or a dysfunctional relationship.

The Totally Internal – i.e. illness. Forever, always, I am afraid of illness. Because it sprung to life out of thin air, and then, miraculously sprang back out. I don't trust it, this miraculous body of hers, to go about its business without incident. When she coughs, a small remote voice whispers, pneumonia. When she's tired, it suggests anemia, relapse, or… worse.

So much of parenting is learning when and how to back off, to stop infecting your kid with your own anxieties, to let your kids experience their own powers of resilience. The blessing of a skinned knee and all that. We have been told by people with loads more medical knowledge than either my husband or I possess that our daughter is FINE. And so what's the problem? The problem is that the nervous system is a slow learner. It takes a long, long time to believe in a new reality. To relinquish the hypervigilance that once served you so well. I saw my brother's face, I knew the hand belonged to him, and yet I could not suppress those screams.

Our lingering worry over Gracie is just what those screams were—the comet tail of a terror that has already passed. The fact that you can't protect your child completely is both the great tragedy and the gift of parenthood. You are not your child's guardian or warden or nurse. In the final tally, you are simply the spark that set them in motion. They belong as much, or more, to the world as they ever did to you and they are subject to the world's tides.

That's what I tell myself. That's what I try to embody; confidence in her at every level. Internally, I am still a (semi) secret worrier, a world class fretter, a nail biter and hair twister. Outwardly, I try to project calm. Because my daughter doesn't need to suspect, or intuit, my every irrational fear, my every inner wince. Exactly the opposite, she needs to get the idea that I believe she is what she is: healthy, strong, outwardly mobile. On her way places. Cured.


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