Now I See You (19 page)

“Of course I have a plan,” I assured my mother. In fact, I had a few plans. The first was called “At All Costs, Ignore Encroaching Blindness.” The second was, “Panic.” The third, a bit more detailed, was “Make Grand Commitments to Do Impossible Things,” and it included action items such as:

• Try not to give babies incurable disease

• Never lose children in public—Use neon colors? Leashes? GPS?

• Explain vision loss to kids so they don’t feel ashamed of their own limitations

• Teach kids ASAP to identify colors, read, and cross streets safely

Then came the big item, the one thing I knew had the potential to make everything work out okay yet was, for some reason, nearly impossible:

• Tell people about visual impairment! You CANNOT do this ALONE! STOP BEING SO GODDAMNED PROUD AND STUBBORN!

That was as far as I’d gotten. After that I’d have to wing it.

One part of the plan I figured I could tackle now was telling Lorenzo about my eyes. He was only two but I felt confident he could grasp it. After all, the kid was already reciting Shakespeare. The day he farted in the bathtub and remarked, “Bubble, bubble, toil and trouble,” I decided he was old enough to have The Talk.

All the parenting books I’d read recommended that when broaching big, complicated subjects with young children, it was best to keep things simple and try not to inundate them with too much information. So, one afternoon while I was helping him clean up his Thomas the Tank Engine trains, I mentioned casually, “You know another reason we have to clean up? Mommy doesn’t see so well and sometimes, I can’t see your trains when they’re on the floor. And if I don’t see them I’ll trip over them and get hurt and maybe even break the trains.”

“No!” he cried, shocked and chagrined. “No Mommy! My Tata!”

“Well, Mommy doesn’t want to break Thomas,” I clarified. “But I don’t have good, strong eyes like you, so sometimes I can’t see Thomas. Especially when it’s dark. Mommy can’t see in the dark.”

“Dar? Dar? Dar?” he inquired, turning to look at me. His blue eyes were always flung open so wide, ever inquisitive, always watching. When he blinked, I felt like he was swallowing the pictures. His was a look so unguarded, it made me feel like I should stand sentry, to make certain nothing harmful slipped in.

I tried to remind myself that what I was revealing wasn’t harmful; in fact, it was just the opposite.

“Yes, in the dark, at nighttime, Mommy’s eyes don’t work as well as other people’s,” I replied, then paused. That seemed like enough information for now, a good two-year-old-sized morsel. “So will you help Mommy? Will you clean up your trains?”

“’Kay,” he agreed, picking up Percy and handing it to me. Then he ran behind the couch to hide while he took a dump in his diaper. And just like that, the conversation was over. Now he knew. One less person I’d have to lie to.

Between throwing up, drafting plans, and breaking uncomfortable news to family members, being pregnant with Baby Number Two was onerous. I didn’t pipe Mozart into my womb and take four thousand photos of my swelling belly, like I had with Lorenzo. The weeks flew by in a haze of exhaustion. When the time came for my five-month sonogram, I arrived half an hour late to the appointment, couldn’t find my insurance card, and was on the phone, shouting instructions to Nonny about how to get Lorenzo to nap, when the technician came into the exam room.

“You ready?” she asked David and me.

“Yep,” I assured her, putting my phone away.

Out of the blackness on the monitor emerged a profile, hazy and grainy but familiar enough for me to distinguish—a baby’s face with eyes and nose and chin. All of a sudden I was reminded that there was an actual human being growing inside of me; it was so surprising that I laughed out loud. The technician pointed out the baby’s two arms, two legs, two kidneys and though these were impossible for me to make out, I felt enormous relief at having her identify them in the right location and quantity.

Then, she turned a knob on the machine and a bass sound filled the room. When I first heard Lorenzo’s fetal heartbeat, I was terrified. It sounded impossibly, unreasonably fast and I was convinced that he’d developed early hyperactivity from the few extra cups of coffee I sipped on the sly. This time, my baby’s heart just sounded strong and sure, like a metronome.

“Heart sounds good,” the technician said. “Now let’s take a look.” Within a few seconds she was nodding and pointing to the screen where I could see a flickering, an alternation of light and dark in the center of the baby’s chest. It moved in synchronicity with the sound.

There are two hearts beating in me,
I thought.

Then the technician sucked her teeth and smiled. “How cute! She has the hiccups.”

I scrutinized the screen for a second before registering what she’d said.

“She?” I repeated.

The technician nodded and magnified a section of the baby’s body that I surmised were the private parts. There was no way I could make them out, not only because the screen was too murky but because I was sobbing convulsively, a choking cry that made my belly shake and the image fuzz. The technician said she’d give us a minute and handed me a box of tissues before she left.

David squeezed my hand and smiled. He knew I wasn’t sad. In fact, in that one expansive moment, I felt as if I’d never been sad or scared or hurt before.

I’d managed for months to build a powerful dam of worry that kept everything else at bay, but when I heard that I had a daughter, the dam was obliterated and the big, great feelings flooded in. The kind described in prayers and religious texts. Beatitude.

“We’re so lucky,” I choked out to David.

Right in the center of me was a tiny person who would one day have a tiny person right in the center of her. A set of Russian nesting dolls. I couldn’t see much on the screen but what I could perceive was life, an infinite promise of life. Nothing else mattered. Compared with this, everything else was just so small.

Tip #14: On taking a stroll

City sidewalks are crowded, and not just with people.

Near the curb, you’ll find signposts, lampposts, hydrants, meters, trees, bike racks, and those plastic dispensers housing free newspapers that no one ever takes.

Near the buildings, you’ll find benches, planters, kiddie rides, sandwich boards, and cellar doors, both closed and open.

To regular people, these are unremarkable elements of the sidewalk landscape. To you, they are obstacles, and you have two options for dealing with them.

Provided you have a small child, you can use your stroller as a buffer, so that the front wheels encounter the obstacle before you and your baby do. To execute this safely, you’ll need a sturdy SUV-type stroller with a big jogging wheel that juts out way in front; use an umbrella stroller and your child will serve as the buffer, which is the opposite of what you want. If this sounds a lot like using a stroller as a mobility cane, that’s because it
is
that, exactly.

Of course, you could just take a middle-of-the-road approach. Literally. Stick to the center of the sidewalk. You’ll still crash into people, of course, but people are softer than fire hydrants.

14. DR. RIGHT

“Are you comfortable?” came a woman’s voice from somewhere in the dark.

I had to laugh. Was she kidding?

The voice laughed, too: “I mean, considering?”

“I’m as comfortable as a person can be with electrodes on their eyeballs,” I assured her. “Besides, now that I’ve been through childbirth twice, the ERG doesn’t seem so bad anymore.”

The memory of those contractions was still fresh in my mind from eight months before, when my daughter, Rosa, was born. Mine hadn’t been one of those lightning-fast second deliveries I’d heard tell of; in fact, labor had taken almost as long as the first time around, though it was infinitely more pleasant since I wasn’t breaking my water during Thanksgiving dinner. Plus, this time, I was intimately familiar with the gift I’d soon be getting, a life-changing treasure—the epidural. And the baby too, of course.

Rosa was, in fact, a dream baby. She was mellow and easygoing and looked so cherubic you’d think she’d floated right off the ceiling of the Sistine Chapel. I’d been worried that being the second-born, she’d get the equivalent of love leftovers, but that turned out to be a groundless fear. Just as I had with Lorenzo, I’d fallen hard for Rosa. Which made it difficult to leave her with my parents for a day and a night to see Dr. Goodstine and his team of research assistants in Philadelphia.

Then again,
I reminded myself,
I’m doing this for her, and for Lorenzo
.

If anyone could hook me up with a clinical trial or some shot at treatment, it was Dr. Goodstine. The man was a superstar, one of the leading retinal specialists in the world. And, almost as important, he and his team were just about the nicest damn people I’d ever had the pleasure of meeting. Linda, who was in charge of conducting the electroretinagram, was so solicitous and thoughtful I felt like I was getting a five-star, luxury lab experience. A far cry from the
Clockwork Orange
episode at Dr. Hall’s office.

The basic mechanics of the test remained unchanged—still the same electrode contact lenses with the same freaky wires attached—but Linda’s little touches made the process humane. She brought me lattes and snacks from the vending machine. She let David come in to hold my hand.

And the music. First, it was Dinah Washington’s velvety vibrato filling the pitch-dark room, and now John Lennon was singing to Yoko about calling out her name in the middle of a shave. It was a small gift that felt enormous. The music gave me something to focus on when I felt the urge to blink and it kept me calm, which was not easy after nine continuous hours of tests.

“Am I almost done?” I asked Linda.

“I think after this, there’s just one more test Dr. Goodstine wants to do,” she assured me.

“Okay,” I agreed, “but am I almost done with this one?”

“Not quite yet,” she replied and I knew this meant we’d only just begun. I’d learned over the past nine hours that Linda was an expert spin-doctor, always accentuating the positive. She didn’t lie, she just didn’t offer details that might cause a patient to panic. When I’d arrived at eight a.m. and asked how long the tests would take, she’d answered, “Dr. Goodstine is very thorough. We’ll be sure to feed you lunch.” Had she told me that I’d still be there at dinnertime, I probably would have walked right out the door, no matter how lucky I was to have gotten the appointment.

I’d waited nearly a year to be seen by Dr. Goodstine and now I understood why: he saw exactly one patient a week. The patients were also research subjects and as such, we agreed to a host of tests that might not have much impact for us personally but would shed light on the disease as a whole. My pupils had been dilated, my blood drawn, my DNA analyzed, and the parameters of my visual field plumbed more thoroughly than Marco Polo exploring China. Not that I was complaining. I did, however, have needs.

“Linda?” I called. “I’m sorry. I just—I need to pump.”

She didn’t say anything for a second, so I clarified: “My breasts.”

“Ahhhhh, right, yes,” she replied. “We’ll take a break.”

Within a few minutes, I was detached from one machine and plugged into another. The assistants made themselves scarce but David was ushered in, to keep me company. We used a flashlight to set up the pump, so my eyes could stay acclimated to the dark.

We sat in silence for a second, listening to the rhythmic
whoosh
of the pump interspersed with the
plink
of milk drops hitting the bottom of the bottle.

“I feel like a guinea pig crossed with a cow,” I observed, holding a flange in each hand.

“Yes, but on the upside, we won’t have to stop to get the baby a souvenir.”

“And she’s worth it,” I said. “I fucking love that girl.”

Rosa was, indeed, almost too good to be true. Not only was she bright and beautiful and smiley, she was reasonable, which is a character trait not commonly found in infants. She ate her peas. She traveled well, cooing in the double stroller as I plowed down pedestrians who dared to tread on my turf—the center of the sidewalk. Most importantly, she slept. When we’d tried to sleep-train Lorenzo by letting him cry it out at four months old, he’d screamed for a full hour the first night, and the second, and the third, and between his screaming and my grandmother’s (“Chile abuse! Dis is CHILE ABUSE!”), we lost our resolve and went back to rocking him to sleep. Consequently, at nearly three years old, the kid could only doze off with a team of trained professionals soothing him. When we sleep-trained Rosa, she cried for five minutes before drifting off to the land of nod. We’d hit the baby jackpot.

In fact, we’d hit the jackpot in general. Though I’d spent my pregnancy panicking about how I was going to handle two kids who were two years apart with shrinking vision and an incurable aversion to being honest about my situation, ever since I’d had the baby, I’d felt relieved. Things were going more smoothly than I’d expected, even for the newly minted big brother.

It was true that he’d ask on a daily basis, “When is that baby going back in your belly?” and he did get apoplectic when I nursed her—“NO! DO NOT MILK THAT BABY!”—but for the most part, he went about his business as though she didn’t exist, which was, as far as I was concerned, the safest situation for everyone. Since Lorenzo was home with me, we had plenty of quality time during the baby’s naps, which were frequent and generous. Even as a toddler, Lorenzo was shaping up to be as big a bookworm as I’d been, and he’d clamber onto my lap and listen to page after page of Maurice Sendak or Mo Willems or sometimes even big-kid books like
Charlotte’s Web
. With the baby sleeping soundly and my sweet boy sharing one of my passions with me, I felt like I’d reached parenting nirvana. Icing on the cake was the fact that I could still make out the print of the chapter books. I mean, I needed to be in a well-lit room and I needed to be holding the book in such a way that the natural light hit the page just right, but still, I was getting by without much hitch in my giddy-up.