Miracle Boy Grows Up (24 page)

Dragon opens a world to me that’ll include the Internet, of course—a completely accessible means of not just socializing but doing research, which I always found problematic in traditional libraries. In short, I’m no longer excluded from the computer revolution.

***

“H
ere kitty, kitty, kitty,” ML calls out from the terrace to the feral cats in the neighboring apartment’s courtyard. Her voice takes on a baby-talk quality when she comes inside and says, “I want something small to take care of.”

This, or something like it, happens morning after morning.

Then, when we’re out walking in the neighborhood, she accosts a bouncing toddler who’s joyfully making his escape from his tired-looking nanny: “Excuse me, young man, but your shoes are untied.”

The final tea-leaf revelation comes when she tells me her OB/GYN recommends a particular brand of ovulation predictor.

I know she went off the pill when we moved to the condo. She’d said she wasn’t ready for kids yet but had heard “it can take five years to get all the pill out of you.” Somehow, baby fever has come more quickly than expected—ask not for whom the biological clock tolls.

“I’m thirty-two,” she reminds me, when showing the OvuQuick she’d purchased. “I’m already past my prime. Motherhood is slipping away!”

And so we begin the process. I’m fully functional sexually. No obvious explanation why she’s not pregnant, after several months of basal-temperature taking and OvuQuick. The stresses quickly compound. ML can’t shake the sense of inadequacy, of defeat. The fact that her mother first become pregnant in her mid-twenties, and her younger sister already has three kids, adds a bitter flavoring to her emotional salmagundi.

Call it a crip thing, but I start out sure we’ll find a solution if we’re patient enough. Your body betraying you? Find a technology, a treatment, a creative workaround, a funding source—whatever it takes to accomplish your goals.

We venture together to a pantheon of fertility doctors. We learn I have a low sperm count—that’s the diagnosis. Doubtless it’s due to my sitting all day—or, it occurs to me, my frequent X-rays as a child. I recall many an X-ray technician when I was growing up who dismissed the notion of my ever fathering children and, therefore, needing a lead shield over my privates. Unless one of my parents was there to insist, it didn’t happen.

Used to seeking medical expertise, to forcing my body to do things it doesn’t naturally do, I feel no hesitation about beginning hormone treatments.

First pills. Then injections. Gonadotropin (trivia: it’s made from the urine of postmenopausal nuns!) is so expensive (and not covered by insurance) that we drive to Tijuana to snag the vials cheap. We find a favorite motel in La Jolla to spend the night, and try to make the best of a bad thing. We have to make the trip multiple times.

On one such adventure we’re stopped by a border guard. “Do you have a doctor’s prescription for this?”

“No. Not on us. But he did send us here for it.” Which is true.

The uniformed immigration Gestapo stares us down and repeats his single message: “You have to have a doctor’s prescription.”

In memory, I pride myself on breaking the standoff. I say to the guard as flatly and self-confidently as I can muster, “So what do we do?”

And I’ll be damned if he doesn’t back down! “Oh, I’ll let you through. This time.”

In fairness, ML’s version of this—and of the four and a half grueling years we spend in the dark maze of infertility, the seemingly endless cycle of monthly disappointment followed by the fragile, tentative rebirths of hope—would surely be different from mine. But to me, she becomes hopelessly sullen and withdrawn, as if she’s stumbled down a bottomless well.

About three years into the ordeal, to maximize our odds, ML starts hormone treatment to increase her egg production. (She has to give herself the injections.) One Saturday morning during this time, we go to the hospital for the egg retrieval. I pace the halls in my motorized wheelchair for the several hours she’s in surgery—only I can’t take it. It’s become difficult controlling my chair now that my hand is weaker, plus I grow uncomfortable and need someone to shift my weight. But there’s no one.

When ML comes out of surgery, I ask if she could move my hand in a particular way. She’s groggy from anesthesia, can’t help me, gives me a dirty look. “I can’t!” she says. It sounds general and all-inclusive, like she can’t take any more.

I wait. I bear up. Gradually she recovers, and we go on. But I’ll never forget. I’m not proud of myself, of my inability to cope on my own, of my weakness under duress. But am I supposed to be able to cope on my own? After all, part of the independent-living philosophy is being honest and realistic about one’s needs and limitations—and accommodating them accordingly. That is, having the maturity to take care of oneself. I vow to learn a lesson from this.

In the end I join an infertility support group. ML declines to go with me. I’m a believer in talk therapy; she isn’t, at least not for herself. (For other people, she’ll say, it’s fine. A matter of personal preference.) But it is that infertility group that refers us to a reproductive endocrinologist who changes our game plan.

In May of her thirty-sixth year, I receive a phone call at home. Which immediately leads me to call the small private elementary school where she’s been teaching for the past few years. I tell the receptionist it’s important. When ML gets on the phone, I tell her what I’ve just heard. With her elementary-schoolteacher’s all-in-from-recess operatic voice, I hear her yell “I’m pregNANT!”

As the months pass, I have no choice but to hire additional attendants. Dad is completely amenable and generous when I request extra
dough
(his clubby, tongue-in-cheek slang, not mine). Sometimes Dad seems more concerned about ML’s well-being than mine, but probably every husband of a pregnant woman has felt something similar.

Our daughter (we had the ultrasound) is due Christmas Eve. She’s late. A few days after Christmas, with no sign of contractions, we see a specialist at the hospital. (ML drives us herself.) “The baby has the cord around her neck three times,” declares the specialist, wielding the ultrasound wand.

A heavy silence fills the small examination room. Again, in the movie in my mind, I’m the one who breaks the standoff. “Should we be worried?” I ask.

“Yes,” he says, and orders an immediate C-section.

During the prep, with a little help from ML as she tries to lie still, I use her new cell phone—bought just for this purpose—to call Jorge, then Roger, a man I’d hired off a list from the independent-living center to stay with me overnight when necessary.

The delivery-room nurse struggles to put a gown over me. It gets caught on my chair controller, and I almost run her over before I can make her understand. After, I tell her to put my chair on manual and just push me.

She pushes me right up to where ML is splayed out and partially anesthetized. At my trusting, helpless wife’s request, I begin a gentle play-by-play of what I see going on.

A few minutes later—as the delivery-room radio plays The Monkees’
I’m A Believer
(“Then I saw her face …”)—Paula is born (named after my mother). And everything is fine.

***

I
stay with ML and Paula at the hospital as much as possible. Remembering the egg-retrieval ordeal, I’m diligent about having Jorge or Roger check in with me every hour and a half to two hours. I’ve learned I need that, need someone to adjust my position, take me to the bathroom, or get me a sip of water at regular intervals. So I can cope over the long haul. And it works! I do not freak out this time. Self-knowledge gives me a kind of power. I wasn’t sure we could do this, ML or I. But we do, and I’m proud of us both.

1996-1999

“My wife made me what I am today—completely self-reliant emotionally!”

—Anonymous

“S
o basically she’s like a single mother?” says a particularly frank (read
tactless
) friend of mine.

I had thought that myself for a time, so my answer is all worked out: “Not at all. There’s more to parenting than changing diapers, you know.”

Still, it
is
a crummy question. Accusation, it seems. I know my buddy is needling, but he’s probably not the only one in the world likely to draw such a conclusion.

The facts are these: I don’t have fantasies of teaching my kid to throw a baseball or catch a football or go fishing. None of that jock stuff. But I would like to ride with Paula on the merry-go-round, carry her high on my shoulders, build sand castles together. Stuff Dad did with me and I remember fondly. But I’ve resolved myself to the reality that I can’t be the kind of father I had; if I try to do activities other dads do I’ll fail and feel miserable, defeated. Yet just because I can’t do those physical fatherly tasks doesn’t mean I can’t contribute.

A while back I’d attended one of those community forums at the independent-living center. A woman explained that just because you don’t do things in the way other parents do doesn’t make you unfit to be an actively involved parent. You just have to find your own methods, your own “reasonable accommodations.” She was a wheelchair-riding foster mother who had proved her maternal chops over and over.

I don’t explain all this to my alleged friend. I simply say that I have my ways of managing. In truth, from the moment Paula was born I launched a new chapter in creativity. Thanks to a startup group in Berkeley called Through the Looking Glass—which is dedicated to parenting with disabilities—I know I’m not alone in this. Learning how other disabled parents cope—what they’ve invented—sparks ingenuity.

For instance, I suggest ML strap a Baby Bjorn to the push handles of my chair, so Paula can ride against my chest looking either backward or forward (without killing my shoulders or upper back). We take many family walks around the neighborhood this way, with me usually whispering (okay, trying to sing) softly to Paula’s curly-topped, half-asleep head.

When she’s a little bigger, we hook a couple of PVC pipes between her stroller and the front of my wheelchair so I can push her in the park.

When Paula’s a toddler, a photo in the Through the Looking Glass newsletter gives us our best idea yet. It shows a mother who installed a child’s seat between the footrests of her wheelchair. We devise our own, simpler version. ML takes an old belt out of the closet and stretches it across the backs of my footrests, behind my calves. Paula instinctively knows what to do: She waddles toward my feet—invariably untying my shoelaces, just for a laugh— stands herself by pushing down on my foot pedals, climbs up, spins around, and sits herself on the belt, between my legs, with the back of her head basically level with the upholstery of my seat.

This becomes a favorite spot for many years, until she’s big enough to ride on my lap.

My chief skill as a parent is making up silly songs and games, and telling stories, while monitoring Paula as she bathes in the kitchen sink or, later, in the tub. Or waiting at the doctor’s office or on long car rides. After a while I notice something about my stories. They tend to be of a particular variety—The Bunny Who Could Not Hop or The Friendly Gorilla (Who Refused to Fight). They’re all about characters who have a deficit in the eyes of their peer group. And by the end of the story we learn not to reject or discount those who seem different. Later, I graduate to Scooby Doo and superhero stories. These usually have a moral, too. Something about gumption and persistence.

No, I can’t change diapers. (Wasn’t really looking forward to that aspect of parenting anyway.) But I’ve learned how it’s done, in case I ever need or want to instruct my attendant or anyone else to do it. Plus I pride myself on being a partner in the decision-making and other details. Somebody has to pay the bills and update family members on how we’re doing! Those sorts of jobs fall to me. I’ve also devised an easy remote switch for a camera and video camcorder, to document every new tooth and other developments.

I don’t kid myself. Obviously, ML has taken on a tremendous responsibility—baby and I both depend on her, and at times she bristles under the pressure. More about that later.

The pressure eases somewhat when Paula’s older and I can find ways to play with her and give ML some much needed rest. We’ve had our sizable terrace enclosed with Plexiglas, to be baby safe, and put a small slide and climbing structure on it. It’s almost like a giant playpen, the enclosed area. I go out there with Paula, keep her company, keep an eye on her, play her games, and hours can pass while ML gets a break. In time she’ll go so far as to get a mani-pedi, but not yet. For now she has to remain within earshot in case something happens beyond my control.

***

A
nother way in which ML is not like a single mother is financially. She doesn’t have to worry about making a living. She becomes financially dependent on me.

That’s a curious perk of my disability. When Paula is three months old, ML’s supposed to go back to work. The prospect breaks her heart. “I can’t see spending all day with other people’s kids while someone else plays with mine,” she says.