Waiting to love my child

My first baby was born with a rare syndrome. Now pregnant with my second, I wonder: What could happen this time?

Published May 7, 2013 11:45PM (EDT)

        (<a href='http://www.shutterstock.com/gallery-90771p1.html'>bart78</a> via <a href='http://www.shutterstock.com/'>Shutterstock</a>/Salon)
(bart78 via Shutterstock/Salon)

The technician pushed the plastic wand onto my belly, and there on the TV screen were white blobs and filaments in a black cone.

“There's the cervix,” she said, as though I'd driven two hours to get the inside scoop on my cervix. “And there's the placenta.” She ran a computer curser over a fuzzy white mass.

But I wanted a profile or a full-body shot, some image that would tell my brain, Yes, there's a person in there, which would tell my heart, Yes, you can risk loving this person.

Right now it was still an it, and I still called it “Baby X.” Right now I still imagined a giant mathematical variable in my pelvis, offering a host of faceless unknowns.

But the tech held off on the print-worthy images and dwelled instead on organs. A flapping, four-chambered heart. A black marble of a spleen. Look, there's the brain: two hemispheres inside a globe.

Finally, the face. “There,” she said.

Except it was not the usual ultrasound profile of sloping forehead, dainty nose, and chin. It was a square shot, and I saw deep and ghostly eyeball cavities. The angular bone structure of the cheeks. A black opening for a mouth, gaping wide. It was a skull in my uterus. A Halloween icon floating in my womb.

The tech almost sounded apologetic. “They look pretty skeletal at this stage,” she said.

I would have to remain patient, and it was hard. My first child already required regular trips to a children's hospital. She will probably never live on her own. Could I love yet another child whose life is not necessarily the typical promise of a sunshiny future but a gray, worrying question mark?

* * *

A life, by definition, possesses the end of itself. This was what I'd thought 18 weeks back, when my husband and I started trying for our second kid. And this was what I'd thought two years before, when we'd tried for our first. But with my first, I was only thinking about the coexistence of life and death in some abstract way. O Life. O Death. The nouns could be capitalized and personified as in some shoddy poem.

Then, two and a half months into my first child's life, a doctor suggested we get her chromosomes studied.

And three months into her life, the nurse explained what she was missing.

And four months into her life -- into my life as her parent -- I had the courage to Google her diagnosis, Wolf-Hirschhorn syndrome. I learned what that missing bit of her fourth chromosome could mean. Developmental delays and cognitive disabilities, yes. But also life-threatening seizures. Potential kidney failure. And a 1-in-3 chance of dying before age 2.

So with my second child, when I say I thought about how a life also possessed its end, I was not just waxing philosophical. I was holding everything I knew to be true about parenting -- that it seemed as crazy as standing at the edge of a precipice and jumping off -- and I was baffled by my urge to do it again.

Now here was my second baby. Not a plump, cooing thing, but a skull staring back at me, sending a message I'd hoped the ultrasound would erase: You are right to fear. Beneath life -- beneath flesh and dew and blood -- is always bone, is always death.

Shortly after the ultrasound, I bought Emily Rapp's book, “The Still Point of the Turning World,” which had just come out. It was an odd choice for an anxious parent. Rapp's memoir tells the story of mothering a child with Tay-Sachs disease. When I carted the book to my midwife's office, with its cover image of a sweet baby's face, I hoped nobody would ask what it was about. But I was spending nights sleepless and fretting about all the terrors and unknowns that faced my second child. I needed camaraderie, and I chose that of a mother who walked an even tougher road than mine.

* * *

My first daughter's chromosomal deletion was not hereditary, so some think I shouldn't worry, but the randomness of her syndrome has made the world all the wackier, all the less trustworthy. There are 22 other chromosomes that could have deletions, or additions, or extra copies. There are single genes that could wreak havoc on a body. There are too many ways to get sick, to die.

Since having Fiona, I've learned about not only genetic syndromes but also babies born with cords around their necks, babies born too early, babies with intestines on the outsides of their bodies. Babies and babies and babies who live nothing like most of the babies I see posted on friends' Facebook walls, who are fat and smiley and cooing and/or babbling and/or doing what I'm told statistically most babies do.

I could have gotten an amnio, which at the very least would have told me if my unborn child has any chromosomal deletions or additions. But that would have put me in a 1-in-300 risk for miscarriage, and my daughter already has a syndrome that only 1-in-50,000 babies has. I see myself in the big, fat “1” on top of any fraction, no matter how large the denominator.

Besides, science can't offer certainty. An amnio only reveals so much. As a geneticist once told my friend whose results came back normal, “Some things we can test for. Some things we can't. But that's what you sign up for when you sign up to be a parent.”

“I didn't sign up for this,” I cried into a cellphone just a few weeks after learning about Fiona's diagnosis. I was pumping gas, and the world, including the gas station, was filled with able-bodied people, and my child was not one of them, was now slated for a swallow-study to see if she could even handle her own spit without slowly killing herself.

But I was wrong -- I had signed up for it. Or at least the possibility of it. I just didn't know.

You, Aspiring Parent, thought you were signing up for burping and night feedings and fingerprints on your windows, for Little League and pubescent door slams and an eventual first day of college. You weren't. You signed up for uncertainty. You signed up to stand at the edge of a cliff and jump off. You signed up for love, too, but whenever you sign up for love, you're also signing up for the risk of loss, for the possibility of heartbreak.

And maybe that's the reason why I carted Emily Rapp's memoir to my midwife's appointments. I needed to hear from a woman who intimately knew this risk, this heartbreak, a woman who understood the real contract a person signs when she or he looks at another and says, “Yes, let's become parents.”

In one essay, Rapp talks about one of the most isolating sentences she hears as a mother to a Tay-Sachs kid: I cannot imagine. Within three years of life, a child with Tay-Sachs will die. She challenges people to imagine this kind of parenting. “In the end there are no limits to what one can imagine. It's how humans are built; it's how we survive. You could care for a dying child if you had to, because that's what love would require.”

I cannot imagine having one of those babies I see posted on Facebook. A baby who does not raise alarms with her very first breath. Maybe because my first baby has a neurologist and a cardiologist and an orthopedist and a nephrologist and an early interventionist, a geneticist and a homeopath and a naturopath and a speech pathologist and an occupational therapist and a physical therapist. Maybe because my baby, while delightful and happy, will never reside in any realm of typical. Will always put those of us who love her in a precarious spot of worry, hovering over her bed at night to see if that strange breathing is a seizure, monitoring her kidneys with ultrasounds to see if there's a warning of failure, scanning the workings of her heart to see if the hole closes or widens or just holds still.

I cannot imagine mothering a child who looks and feels and behaves as most babies do, who is dewy and fat with the promise of the future. A child who I can expect will outlive me, will drive cars away from me, will write her own bills for a house without me. Instead, as my belly button pops out and as my tent-shaped maternity T-shirts become too short, it seems more important to imagine a child whose days are not just unknown but clearly numbered, a child who challenges his mother to reinterpret much of what she knows about being human.

* * *

This year, at least three children with my daughter's syndrome have died. One died just last week. A friend wrote that her thoughts went to all the families who parent kids with this syndrome because we “appreciate these fragile lives and know the importance of embracing every moment.”

To which I thought of all the times I did not embrace the moment. The times I checked my email while Fiona whined for me to play with her. The times I prayed she'd just go down for a nap so I could get this or that done.

Because my daughter's syndrome doesn't come with an absolute life end -- because while some die at birth, others live on to middle age -- I can forget how fragile she is. I can sometimes pretend I don't live with zero ground beneath me.

Can you really hold the preciousness of a life every day, every minute? Is it possible to carry the true weight of our lives -- which is the fragility of them -- if we aren't intimately reminded?

For my second child, the first ultrasound came back “normal.” No red flags. All systems go.

Still, I've worried.

“You're afraid to let yourself love this baby,” an intuitive friend said after I described my sleepless nights.

“Yes,” I said, and teared up. The thought hadn't occurred to me.

I love my daughter with a hugeness I've never known before, but it is a hard love. She is a clapping, music-loving joy, and at almost 2 years old, she is also a floppy, willowy creature who cannot make most vowels or consonants and is nowhere near crawling, much less walking. And loving her breaks my heart open. It can hurt almost as often as it heals. That I'm afraid to love again seems cold and cruel to the little one in my middle, whose nails are growing and whose organs are all present and whose eyes are just starting to open.

I crave the illusion of certainty, the pat on the shoulder and the words, “Everything will be OK,” and the courage, no, the naiveté to believe them.

About two months after the first ultrasound, I told the midwife that I couldn't shake my worry. She thought she was being kind when she ordered a second ultrasound, which she called “therapeutic.” It would put my mind at ease.

The universe is a tricky bastard. It bit my quest for certainty and spit it back at me. The results indicated, not just a “too-big” baby, but a baby with a larger-than-expected abdomen. There were now health concerns. It took several versions of the question to get the midwife to answer, but eventually she told me the worst-case scenarios. A gastrointestinal issue, maybe. Microcephaly, maybe. The latter diagnosis, I knew, could be a marker for a host of other problems.

“Well, now I'm terrified,” I said.

To which the midwife said, “Yeah, it's terrifying.”

* * *

Rapp makes clear that any lesson she learns as a result of mothering her son is not the reason he exists. “The meaning of Ronan's life was not to teach me; we often say this about people who defy our notions of normal and I find it pathetic, patronizing ... Ronan would have his own path that had nothing to do with me, and I would try to understand it in my limited way.”

Yes, yes, yes, I thought, and furiously underlined. Though my heart has repeatedly broken open as a result of mothering my daughter, she does not exist to transform me. She has her own purpose. Still, the experience of loving Ronan teaches Rapp lessons, many of which I’m slowly learning myself. For example: “It took this experience to help me see clearly, to understand that the bulk of the popular parenting advice champions an approach to living that completely complies with achieving bogus standards of success.” More furious underlining.

Rapp mentions the mothers who make “products” of their kids, the moms for whom parenting becomes yet another venture at which to succeed. In such a case, the child is not a person but a measurement of one’s success. But the limits of Ronan’s body refuse to offer Rapp the back-patting moments of typical modern parenting. Walked before age 1! Started signing at 9 months! Breast-fed immediately after delivery, that’s how smart he is! Instead, Rapp’s son played with his toys in reverse.

At 0 days old, my daughter already came out delayed. She was born at 41 weeks gestation, and some exam of her body’s natural movements had her pegged at 37. She was so small she didn’t even land on the growth curve — she fell somewhere off the bottom margin of the page.

Before Fiona’s diagnosis, I was susceptible to this achievement style of parenting. I’d read birth stories, for instance, from women who forewent the epidural and bragged that their children were consequently “so aware” and scored “perfect 10's” on the Apgar. A perfect 10? That was like an A-plus. I was hell-bent on a natural birth from then on.

But my daughter never measured up to doctors’ expectations.

“Did you smoke?” a nurse asked within an hour of Fiona’s life? “Were you on any drugs?”

“It’s either bad seed or bad soil,” one of the hospital pediatricians said, meaning either I was the bad soil or my daughter was the bad seed.

Just as parents were asking me, “So is she sitting up yet? Eating solid food yet?” and on and on, I was learning that my child might never do these things, that to do even one of these things would be, not a given of development, not an aspiration to do “early” so that I could brag and say, “Look how smart,” but a major achievement that, if she’d do them at all, she’d do them far later than expected.

And the only way to survive this, at least with any joy, was to see what Rapp also had to see: that the desire to approach parenting as a race, as a series of achievements measured by the output of one's kid, is a cultural sickness. That there is a deeper, more transformative way to parent.

I've found no greater teacher of this transformative way of parenting than Rapp. And maybe I'm reading her book while pregnant to highlight the real power of parenting. It is not to raise children who outlive us (Rapp: “My son was being destroyed, every minute of every day, by the lack of one stupid enzyme”), not to raise children who will eventually become the future as long as we teach them well à la Whitney Houston.

I think it's to be brought to our knees with a love we have no choice over. To surrender to that love. To say, Yes, yes, yes, I will love whomever we find ourselves holding. Nothing seems to underscore this love more than the possibility of its loss.

Rapp: “What makes the situation with my son so horrible is that one can imagine such a loss; if you allow yourself to feel great love (which is not an option when you are rocketed by love for a child, a connection that allows for no option but to be all-in), then you must imagine gutting loss. You cannot have one without the other. To fully live is to tremble, always, on the lip of losing everything, which is why true love -- of a child, of a parent, of a partner, of a friend, of a pet -- is so terrifying, and why many people never allow themselves to feel it fully.”

Yeah, it's terrifying, the midwife had said after my second ultrasound, and that was about all she could say, other than, Come back in three weeks for another measurement.

* * *

Today, at my third and hopefully final ultrasound, the first image I see surprises me. It's not a scary skull, not a sweet profile, not even an indifferent blob of organ. As I crane my neck toward the computer screen, I immediately catch the intricate, long ripple of vertebrae up my child's back. Her spine. It's a tightly knit totem. A series of stepping stones. It seems holy. Evidence of my child's life force. Each intricate bump is crucial, guarding the nerves as they weave through the spaces in the vertebrae to find the organs, to communicate to the brain.

I often feel crazy for doing this. I often shake my head at myself, amazed and baffled that I've asked to do this a second time: to stand at the precipice and jump.

But here I am. Seven-plus months pregnant. Having no DNA test to tell me who lurks behind the stretched skin of my abdomen. Having only one “normal” ultrasound and one “big-belly” ultrasound and no other clue, really, as to what this life holds, the life that will now become my responsibility.

My new daughter has shown me a skull beneath her face, and she has shown me a dazzling spine. She's shown me that she possesses the inevitability of death, yes. But she is also living. And she is mine.

And as I stare at that third ultrasound while the technician clicks and measures her femur bone, her head circumference, her supposedly giant abdomen, I think this without even consciously meaning to: “Are you OK, my love? Are you OK in there?”

The white blobs and filaments in the black cone do not answer me. And yes, that is terrifying. But I notice she is no longer Baby X. She is “my love.” Whatever loving her entails.

By Heather Kirn Lanier

Heather Kirn Lanier is the author of the memoir, "Teaching in the Terrordome: Two Years in West Baltimore with Teach For America." She blogs about her daughter, Fiona, at starinhereye.wordpress.com.

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