It wasn’t so hard really; all it required was that I never take my eyes off him unless he was physically attached to me, and that I run on hyper-drive, at Maximum Level Alert every waking second. Yes, it was exhausting, but that’s why God invented espresso.
I’d been managing so well, in fact, that I hadn’t even needed to start telling people about my vision loss. When Lorenzo was a newborn, I’d readied myself to bite the bullet, but then I’d discovered I didn’t need to really, that I could handle this parenting thing on my own. David lent me his eyeballs for the detail work, and that filled in the gaps, for now. Eventually, of course, my vision would get so blurry and constricted that I’d have to reveal my limitations to the world, but I’d cross that bridge (or jump off) when I came to it.
“DADA!” Lorenzo screamed, slapping his little hands on David’s left pec. A new tattoo stained the skin there, a few inches from the place where my name was marked on his arm. Etched in red and blue ink was a human heart, with four chambers and ventricles, and underneath in capital letters was Lorenzo’s name. David had come home with it a few days after the baby’s first birthday and Lorenzo was fascinated by the image, even if he didn’t understand what it meant.
“Oh, here they go,” David told Lorenzo. “Get ready.”
“Nove, otto, sette,” chanted the crowd, along with the DJ’s booming voice.
“David,” I said, feeling down his arm until I found his hand and slipping mine inside. “Don’t let go.”
I needed to hold his hand but I wanted to, too. We were taking the plunge together.
“Sei! Cinque! Quattro!”
“YA! YA! YA!” Lorenzo chanted along with the crowd.
“Tre! Due!”
David tightened his hand around mine and then, “UNO!” boomed the crowd. Just as if an invisible gate had been raised, the people on all sides, the men and women and children, poured into the ocean. David pulled on my hand and we ran together, Lorenzo bouncing in his arm. I couldn’t see anything for a minute, only perceived the darkness deepening as I turned my back to the boardwalk lanterns. Then, suddenly, my feet met water and my front was splashed with cold. I let go of David’s hand and holding my breath, dropped down into the quiet below the surface.
When I popped back up, gasping and sputtering, the sky wasn’t black anymore but red and orange and white. Cracks like thunder exploded overhead and for a second, I cowered, unsure what was happening, Then I saw the colors falling in pieces out of the sky and a new burst of color radiating out from an epicenter which seemed to be directly over my head. Fireworks.
There was a splash beside me. I felt David’s hand in mine again and I heard Lorenzo shriek an unintelligible squawk, equal parts terror and wonder and jubilation. It was a perfect expression of the feeling in my heart.
“See the colors?” I said. “See all the pretty colors.”
We watched the fireworks bloom, big enough for even me to see. The whole scene was electric and I felt totally plugged in, as ablaze as the pyrotechnics overhead.
The fireworks lit the water so bright that I could see Lorenzo’s face clearly, his eyes a wide, unblinking blue. He was mesmerized.
Thank you, I prayed, for letting me see this. For letting me see him see this.
“I can’t believe we almost missed it,” I whispered to David.
“I know,” came his voice next to me.
Were it not for Lorenzo, I thought, we’d be snoring right now, having traded in a once-in-a-lifetime experience for an hour’s more sleep. Though we’d traveled four thousand miles for this midnight swim, we almost didn’t make it the very last quarter of a mile. But the littlest of our clan had rescued the night, and now none of us would ever forget it.
Later that night, once Lorenzo had finally surrendered to sleep, David and I curled up together. We’d gotten our second wind all right, and were still feeling pretty electric. This, combined with the fact that David would be leaving for New York the day after next, whipped us into an amorous mood. Whipped me at least. David is always prewhipped, at the ready should we ever find ourselves alone with ten minutes to spare.
In the middle of our carnal embrace, David paused for a prophylactic and I stopped him.
“Don’t use one,” I whispered.
This was not something we’d planned. I mean, we’d discussed that we wanted another baby eventually, but not necessarily nine months from now. Unlike other women, though, who approach the decision to have another baby with timetables, ovulation charts, and lists of pros and cons, I had exactly two points to consider: 1. I loved being a mother and 2. I wasn’t blind yet. The longer I waited, the more my retinas would deteriorate; the more they deteriorated, the harder parenting would be and the higher the probability that I’d make some colossal mistake that would make it impossible for me to justify having another child. Not just to David, who trusted me and followed my lead, but to myself.
The window of possibility was still open but inching closed all the time. So I asked David to take another leap of faith.
“Are you sure?” David asked.
“Yes,” I replied, breathless, “yes yes yes.”
Tip #13: On telling your child about your vision loss
I suggest tackling this conversation while your child is still young, so young, in fact, that he may not even remember it, and certainly won’t have the vocabulary to tell anyone about it. Kids can’t keep a secret for shit—unless they lack all verbal ability.
13. PLANNING PARENTHOOD
“No! No! No!” Lorenzo yelled, squeezing my lips together with his chubby fingers.
I pried his fingers off my face, carried him swiftly into the living room, and plopped him in front of his box of toys. Of course, neither hell nor high water—and certainly not a bunch of wooden trains—would keep him there; when I raced back to the bathroom, he was right behind me. Then I had no choice but to fend him off with the back of my arm, like a nightclub bouncer controlling the crowd; I didn’t want to blow chunks directly onto the child.
“’TOP MAMA!!! Lorenzo shrieked, redoubling his efforts to prevent me from vomiting. I’d have loved to hear why, exactly, he was waging a one-man battle against my morning sickness, but since he wasn’t even two years old, he couldn’t offer much in the way of clarification. He was like a well-intentioned but deranged vigilante; he’d protect me from my own vomit, no matter how much I begged him not to.
I gritted my teeth tight, feeling like the First Chinese Brother That Swallowed the Sea. With one hand, I fended Lorenzo off and with the other, I wrestled with the toilet lock we’d put on to keep the kid from playing with his bath toys in the shitter. Highly effective, that thing. Too effective, really.
“MAMAMAMAMAMAMAMAMA!” Lorenzo screamed, frantic now. Great. Now in a minute, on top of everything, I’d have my neighbor knocking on the door, asking if everything was okay in here.
Just as I was reaching the absolute limit of my ability to hold back my puke, the toilet lock popped open, and I took careful aim, honed through weeks of practice. In under two minutes, I was washing my mouth out at the sink.
Lorenzo crumpled into a defeated heap and sobbed. He’d lost the battle again. I felt genuinely sorry for the kid.
“Oh, honey,” I murmured as I sank down to the floor beside him, “I’m so sorry. Mommy can’t stop it. But it’s okay. It doesn’t hurt. I’m just working hard to grow a baby in my belly.”
I was only a few weeks into my second pregnancy but already, it was shaping up to be harder than I expected.
I’d had terrible morning sickness with Lorenzo, the kind that makes other women hateful because I had to intentionally try and put weight on during my pregnancy. I found this to be compelling evidence that the only diet that gets fast, dramatic results is bulimia. Not that I’d recommend it; I’d far rather be full-figured than walk around puking in my hand. I tried every home remedy out there—peppermint gum, saltines, B6, ginger candies from Chinatown—and all they did was change the taste in my mouth when I thre
w it all up again. I tried acupuncture and sea bands and sniffing handkerchiefs doused in lemon verbena oil like a Victorian gentlewoman but I just kept on tossing my cookies until I delivered Lorenzo, at which point I immediately felt better.
The memory of this nausea marathon was very clear in my mind when I got pregnant with Number Two, but I was convinced that this time would be different. This time, I’d be that beatific, glowing mother-to-be doing downward facing dog and drinking smoothies. Of course, the only downward-facing position I ended up in was with my head over a toilet.
In fact, when I looked back, I couldn’t recall what could‘ve been so bad about upchucking a few times a day, when I was free to do so without a tiny madman hell-bent on stopping me.
The vomiting wasn’t just miserable in and of itself; it also served as a reminder that my body was under a lot of strain, and this made me worry about my vision. During my first pregnancy, I’d noticed my eyesight worsen—at least I thought I did. It was tough to tell since the change was vague and hard to quantify. It was now a challenge to read the price slapped on items at the grocery store. The glare on sunny days was as blinding to me now as nighttime, and I couldn’t leave the house without sunglasses. Navigating stairs in dimly lit brownstones required me to use my foot almost like a cane, tapping my heel on the back of each step to judge its depth and width. When I was writing articles on my laptop, I kept having to enlarge the font size, first to 14, then 16, then, begrudgingly, 18.
What all of this boiled down to was: my vision had gotten worse since I’d gotten pregnant the first time. Now that I was pregnant again, who knew how much worse things would get?
When I brought it up to my latest retinal specialist, a perfectly unobjectionable but rather noncommittal and uninspiring doctor, he said he’d heard a similar complaint from other mothers with RP, though there was no hard and fast proof that pregnancy accelerated the disease’s progress.
All I knew was that I looked like a woman being eaten away by a deadly parasite—wan, gaunt, prone to fainting—and it stood to reason I’d lose a few more rods and cones than when I was well. All I could do was hope it wouldn’t be more than a few. In any event, it was a small price to pay for what I’d get in return. And besides, it did no good to worry.
This, however, was a perspective I knew my parents and grandmother would not share; they were wired to worry, whether it did any good or not. So I decided not to tell them about the pregnancy for a while, though this was easier said than done. After all, David, Lorenzo, and I ate dinner at my grandmother’s house in Bensonhurst on a regular basis.
Nonny, ever-attuned to what went onto her guests’ plates, couldn’t help but notice that I wasn’t eating much; all I had on my plate was a slice of Italian bread and a few pieces of penne with the sauce pushed over to the side. This, of course, aroused her suspicion.
“Wat’s a matta wit you?” she asked, eyeing me skeptically from the stove, where she was frying up riceballs. “You not eatin’ anything!”
“I’m eating,” I protested.
“Wat happen—you don’t like da bolognese sauce?” she persisted, “I woke up at four o’clock dis mornin’ to make da sauce.”
“No, no, I like it,” I assured her, “it’s just—I’m—I’m on a diet.”
The famously effective bread-and-pasta diet.
“Ohhhhh,” she murmured, nodding her head, “Dat’s good. You hadda beautiful figure before you hadda Lorenzo.”
“Thanks Nonny,” I replied, glaring at her. “Thanks a lot.”
“You know wat? It’s workin’,” she observed. “You lost alotta weight.”
I figured this would satisfy her for a few weeks. It satisfied her for exactly thirty seconds.
“But now dat’s enough, don’t go overboard!” she ordered, placing a cutting board piled with sliced salami in front of me. “Eat some a dis soppressata I got for you. Maria’s cousin brought it from Sicily, in her suitcase.”
The thought of ingesting any kind of meat product, much less one that had taken a intercontinental flight in Maria’s cousin’s suitcase, probably wrapped for safekeeping in a pair of granny panties, was so mortally revolting to me that I was forced to excuse myself immediately.
“Where you goin’ now?” My grandmother was obviously vexed.
“Bathroom,” I managed through gritted teeth. To mask the sound of my retching, I turned the sink and shower on full blast and flushed the toilet continuously.
“Wat’s da matter wit you?” Nonny yelled, banging on the door. “Watta you doin’ in my bat-room? Stop wastin’ da water!”
Her meddling was as bad as Lorenzo covering my mouth midspew, almost more than I could stand.
Eventually, I made it to the eleven-week mark and got back the results of my prenatal screening test, which were normal. This was the point at which David and I had agreed to share the news with people and yet, I didn’t feel ready. My boobs swelled so much that I had to buy new bras and my belly popped enough that I had to unbutton the top of my jeans. Still, I didn’t feel up to telling my family. I made up stories to cover for my obvious fatigue. I lied about why I wasn’t drinking wine at dinner. The pregnancy was becoming another secret to keep, just like my eye disease. Which was odd because this wasn’t bad news, not remotely. In fact, I was elated to be expecting again: it was exactly what I wanted.
I’d saved the EPT test with its double pink lines in my panty drawer; I’d see it there every morning when I got dressed, and it’d make me smile to be reminded of what was coming soon, like a kid on Christmas Eve who’d momentarily forgotten that tomorrow would be the best day of his life. I was thrilled. I was just terrified no one else would be.
“Maybe I just won’t tell my family,” I joked to David on our way home from dinner at my grandmother’s somewhere around week fourteen of my pregnancy. “Like, ever. I’ll just suddenly have another baby and I won’t even say a word about it. Just business as usual.”
“You’re almost thirty years old,” he said. “You know that, right?”
“What are you trying to say?” I countered.
“I’m trying to say, you shouldn’t care what people think. It’s your life. Our life.”
The next day, when my parents stopped by with Junior’s cheesecake, I decided David was right. I handed a sonogram photo from our last doctor’s visit to my mother.
“What is this?” she asked. “Is this—this isn’t Lorenzo?”
“No,” I told her. “It’s his brother or sister.”
Then came the look—shock and fear and excitement all balled into one overladen moment, taxing the muscles of my mother’s face. It was, as I’d anticipated, uncomfortable. But immediately, I felt a thousand-ton weight lift off my shoulders.
“Is this a joke?” she asked, looking at my father. He turned to me expectantly, as if this were a very distinct possibility.
“No,” I replied, a nervous laughter erupting from my throat. “Surprise! I’m pregnant! Isn’t it great?”
Then, just like they had the first time, my parents composed themselves: my dad giving me a hug and my mother making a joke about where the hell were we going to put another child in this shoe-box rat hole of an apartment? Later that night, though, she called to voice some genuine concerns, in the process breaking the decade-long code of silence about my eye disease: Didn’t the doctors tell me that pregnancy could speed up the disease? How was I going to keep up with two kids under three years of age? Had I given this any thought? Did I have a plan?
What a ridiculous question.
“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?”
Now I See You Page 14