What I Thought I Knew: A Memoir (17 page)

“We’re not four people, three of whom were meant to be born and one who wasn’t.”

“If I win this case, her surgeries and doctors’ visits and medication and who knows what else will be paid for. Do the math, Michael. I have to do this for Eliana.”

“I don’t want anything to do with this lawsuit.”

We are, meanwhile, paying the minimum fees on our mounting credit card bills. I’m editing
Play by Play
, but I can’t tour, so my income is minimal. Michael is touring—school shows in upstate New York, corporate performances in Chicago for Arthur Andersen. He’s flying around the country. We’re both taking on as much work as we can.

I hire a babysitter so I can get my work done. Jasmine the babysitter charges a lot because she has to pay a babysitter to take care of her daughter in Brooklyn while she’s babysitting Eliana in Manhattan. Eliana is expensive. We go deeper into debt.

 

 

I sign a contract with Joan Miller and sign dozens of release forms so that she can gather evidence. My lawsuit on Eliana’s behalf gives me a sense of maternal purpose. I’m getting really good at the advocacy part of parenting: like finding a doctor for Eliana when every doctor has said no; like taping tubes to my nipples so Eliana will be fortified by my meager allotment of breast milk; like suing for medical malpractice.

My mother the sociology professor taught me, “The way to change people’s attitudes is to first change their behavior. Their attitudes will follow.” I trust my mother’s faith in this tenet of social science. If I can just master the behavior, make a habit of maternal self-sacrifice, the rest—

The rest? I can’t remember what “the rest” is, just that there’s something missing. What is it? I close my eyes and search for that thing I used to have. It glimmers briefly and eludes recognition. What am I looking for? A brilliance of light and color? An effortless sense of connection? An illogical perception of delight? Ecstatic yearning? A dimension of emotional texture and depth that I once took for granted but is now hidden, and if I could just remember what I’m looking for, I could remember where it’s hidden? As a little kid, I used to think, “When I’m a mommy, I will do
X
and I won’t do
Y
,” keeping an inventory in my head of the things I would do just like my mother did, and the things I’d do differently when I had children, and now that I’m a mother who’s forgotten how to be one, I wish I could remember the maternal manifesto I believed so adamantly when I was six, I could really use it, but the
X
and
Y
details are lost, so I’ll grab hold of whatever I can grab hold of, which is “If I can just master the behavior, make a habit of maternal self-sacrifice—”

—the rest (I hope) will follow.

“You are severely depressed,” says Dr. Bellucci, the psychiatrist Dr. Arbogast insisted I see. She specializes in postpartum depression and other disorders related to childbirth. “I’m going to prescribe an antidepressant.”

“No. Antidepressants are absorbed by breast milk. I exposed Eliana to enough chemicals before she was born. I don’t want to inflict on her the unknown secondary effects of the serotonin reuptake inhibitor you want me to take.”

“Would you consider stopping nursing and getting treatment for your depression so that you can bond properly with Eliana?”

“I’m nursing her till she’s six months old.”

“You told me she’s not getting much breast milk.”

“She’s getting
some
. And I feel
very
bonded to her. I didn’t for a while, but this is who I am now. I’ve given up everything else for her.”

“You also told me you fantasize about throwing yourself in front of a moving truck, which I’m sure you agree would be very harmful to Eliana.”

“I’m not really going to kill myself, I just imagine it. And it’s usually not when I’m with Eliana. It’s only when I’m alone that I get hit with these ninety-five-mile-an-hour hardball pitches into my brain, with these terrible, suicidal fantasies.”

“I can prescribe meds proven to have the lowest absorption rate by breast milk. You can take it just before Eliana goes to sleep so it will be out of the breast milk before you nurse her. Here, you can read the studies.”

I tried two different antidepressants.

Zoloft made me feel temporarily psychotic. In the middle of a sleepless night, my mind raced, and I was overwhelmed with waking nightmares. Paxil had the opposite effect. It took two weeks for anything to happen. Then I was slightly sedated, physically relaxed if a bit groggy. The suicidal thoughts ended.

“It takes the edge off your depression, doesn’t it?” asked Dr. Bellucci.

Can you take the edge off something with no edge? Depression has an amorphous shape, no edges or corners, an all-encompassing cloud. My depression itself, the debilitating sense of hopelessness, was a dulling experience. At its worst the dullness made me feel poisoned. Paxil filtered out the poison. I was able to sleep through the night. “Yes, it takes the edge off.”

Eliana started smiling.

So did I.

It’s heaven when your baby smiles at you. It causes mothers and fathers to fall in love, over and over, every time she smiles.

 

 

She started to read at six weeks.

 

 

Okay, that’s the inflated claim of a doting mother. She wasn’t reading, but she was fascinated by books. And I swear, when she was six weeks old I read
Goodnight Moon
to her, and when I said, “Turn the page, Eliana,” she jerked her tiny hand to the cardboard page and pushed it to the left. Every page!

 

 

At the end of January, I got my period, the only time in fifteen years I’d had a period while not on ERT.

“Good lord, Alice, you certainly are not low-estrogen anymore, if you ever were,” said Barbara, now my regular gynecologist. “Very few women get their periods so soon after giving birth. Your reproductive system is on go, that’s for sure. You’ll definitely have to use birth control if you don’t want to get pregnant again.”

Scene 4

Eliana’s Early Intervention home services begin in February.

Cathy, the physical therapist, comes to our apartment three mornings a week. She asks me to be in the room with them for the whole hour. She could use the extra set of hands. I hold Eliana’s ankles while Cathy stretches her over a therapy ball to straighten her C-curve. It hurts her to be stretched like this and she cries every time, which makes me cry. But Cathy is an inspiring coach. She talks Eliana through the process, encouraging her all the while she is crying. Then, as soon as each stretching session is over, Cathy holds her, and Eliana is all smiles and hugs. Despite the pain she associates with Cathy’s visits, the moment Cathy shows up at the apartment Eliana smiles and squeals with excitement.

Cathy improvises like an artist. She used to be a dancer, and she’s translated her creative passions into her Early Intervention work. She scopes out the apartment for props, turns a pillow, a teddy bear, and a cereal box into an obstacle course.

Sometimes Cathy shows up with her two-year-old son, Todd—“Hope you don’t mind. This is totally against Early Intervention rules, but my babysitter didn’t show”—and the session turns into a work session cum play date, toddler and infant equally curious about each other. Cathy assigns Todd jobs that make him feel important, like shaking bells and rattles to cheer Eliana up after she’s been stretched.

One day Eliana and I show off to Cathy how she’s learning to hold my hands to pull herself up to standing, and Cathy goes ballistic. “Don’t you dare let her walk before she crawls,” she admonishes me, as if I’d let Eliana put her hand in fire, “or her proprioceptive responses will never develop properly!”

“Her what?”

“Proprioceptive senses are sensory nerve terminals in the muscles, tendons, and joints that keep track of your body position and movement. Proprioception tells the brain about the position of your body parts in relation to one another, and the position of your body in relation to the world.”

“Why is crawling important?”

“The infant develops proprioceptive responses through her knees and her toes and her hands when she crawls. It has to happen in infancy, or forget about it. Caput. Window of opportunity closed. Hey, Eliana, ya hear what I told your mom? Don’t think you can wheedle out of crawling, just ’cause you’re cute. It doesn’t have to be pretty, but you have to get around on all fours before you walk. Capeesh?

“Because of Eliana’s asymmetry, it’s super important for her to learn how to walk on any surface: level or uneven; barefoot or wearing shoes; with or without a shoe lift; with or without leg-lengthening. Her proprioception has to be more versatile than other kids. She has to be like a proprioceptive genius! So, like, when she’s a toddler, she can get out of bed barefoot and not fall down; and when she’s ten and she’s at the beach body surfing, and a wave knocks her down, she’ll be able to stand up and get her balance even with the shifting sands and the undertow; and when she’s twenty or fifty or eighty, and she’s dancing with her lover or she’s climbing a mountain, her proprioceptive nerves will automatically compensate for changes in level in the surface below her feet; changes in the height of the shoe lift she’s wearing; changes in her leg length if she has surgery.”

I love picturing Eliana body surfing, dancing with her lover, climbing a mountain. I love Cathy for permanently replacing the “we don’t know if she’ll ever walk” picture with these “she can do anything” pictures.

Once baby Eliana persuades Cathy of her commitment to crawling—executed with an unorthodox pattern of knees, elbows, hands, and toes—Cathy permits her to stand upright, with our assistance. Cathy raids Eliana’s toy box and randomly arranges a colorful set of cardboard stacking cubes in a circle of large and small boxes. She holds Eliana up by her waist, I hold her hands, and she points her teeny toes and steps from one cube to another. Up-down. Up-up. Down-down. Higher-lower. Longer leg down—shorter leg even lower. Bigger foot up—smaller foot higher. Longer leg
way
up—then
way
down with the shorter leg.

Eliana laughs, amused by the surprising changes in elevation in the homemade amusement park ride on her bedroom floor. Her baby-voiced laughter is infectious; laughter begets laughter. Eliana’s open-mouthed giggles, released by each delighted up-down astonishment, make me laugh so hard I’m gasping for breath, which makes Eliana laugh even more, which makes me nearly fall over, which makes Eliana gigglier and her cheeks rosier as she opens her mouth wide to let out each next peal of laughter.

“Her proprioceptive senses are having a field day!” says Cathy, her PT juices flowing. “Think of all the information she’s absorbing through the soles of her feet.”

 

 

Brynna, the oral-motor-speech therapist, comes once a week, with a box of bubblegum-flavored rubber surgical gloves for poking around inside Eliana’s mouth. She wants complete privacy in her sessions. Behind Eliana’s closed door, I hear Brynna sing. Eliana smiles at Brynna when she arrives, so I figure it’s going well.

 

 

Joanna, the occupational therapist, starts two months after the other two therapists; I guess babies don’t need help with their occupations till they’re four months old. I can’t decipher the language of OT. When Joanna waves her magic wand, she wishes for “normalization of tone in shoulder girdle, encouraging greater trunk stability, rotational integration of postural reactions as well as greater integration of tactile, vestibular, and proprioceptive experiences.”

“Can I help during your sessions?” I ask.

“No. But I want you to brush her with a mushroom brush every day. Brush her whole body for five minutes every morning and every evening. Brush in long vertical strokes, from top to bottom. Cover every inch of her skin, and never brush the same place twice. Always brush her at the same time of day, except for the two days a week that I see her, when I will brush her myself. Any questions?”

“What’s a mushroom brush?”

“You don’t know? It’s the soft, plastic brush you use to brush dirt off mushrooms.”

“Oh!” I guess I’ve been too rough on my mushrooms all these years. “Why are we brushing her with a mushroom brush?”

“A brushing program is very effective for sensory integration, especially with high-tone babies like Eliana.”

Joanna gives us a supply of yellow plastic mushroom brushes and we get with the program. Michael, Julia, and I take turns brushing naked Ellie—Julia has successfully initiated “Ellie” as an occasional nickname, with variations including “El,” “Elbow,” and Julia’s personal favorite, “Elbow Macaroni.”

“High-tone,” “sensory integration,” and “proprioception” slip into our everyday vocabulary, though Michael and I don’t completely understand why we’re brushing our baby like a delicate mushroom twice a day.