Her feet were the first sign of trouble.

Gabriella was our first, but even without Lisa’s medical knowledge I knew something was wrong. My wife had just undergone a Cesarean birth, and thus she was a post-op patient herself, with nurses whisking around her bed in the OR. So it was me staring at her feet in terror.

One nurse said “clubfoot”. I remembered the word from novels as an unfixed ailment that left a character limping all his life. But this was my daughter, only minutes old.

They called her left foot a vertical talus. That was the first medical distinction I learned on a day of many: a clubfoot twists down and in, while a vertical talus turns up and out. Gabriella’s left foot lay parallel with her lower leg.

From her hospital bed, Lisa asked the Apgar scores and doctors and nurses discussed other symptoms I was too numb to process, but I couldn’t unsee those feet. I also couldn’t unsee her fragile eyes. Because her mom was getting treatment, I got to hold our daughter first. As soon as the nurse allowed it, I pulled her close.

But what was going on with her feet?

The pediatric orthopedist was one of the first doctors to examine Gabriella, and he reiterated the words, clubfoot and vertical talus, labels as different as her extremities themselves, the first as harsh as an insult, the other cloaked in medicalese.

He recommended casting her. In came the technician with a bowl of water and white strips like tape, dipping and laying and molding them into papier mâché booties from her knees to her toes. To my relief, the casts rendered her feet identical in shape.

It was a week later, a few hours before we recognized our daughter’s dehydration, that we removed the casts for the first time. (The orthopedic nurse had changed them a few days earlier, soaking them away layer by layer.) Now we did it ourselves, me holding her and whistling, you moistening and unwrapping the white layers like a gravelly Ace bandage. I watched with anticipation, hopeful that we would wind up with two feet that looked … well, more normal. But as I learned that day, normal had taken on a new definition in our house.

From the start, Gabriella’s feet were dissimilar. The right foot, the club, was thinner, the toes longer, inflexible, each curled atop the other, and pocked with bones that seemed out of place. One bone protruded badly, and I recall in the weeks that followed Lisa reminding me that the orthopedic surgeon had said we needed to monitor it to make sure it didn’t break through the skin. (I must have blotted out the memory of the doctor saying that originally.)

The left foot was different: flabbier, mottled purple like an uncooked sausage, more bendable. The toes were chubbier. And the bottom lay flat; I thought of the Peanuts characters.

They looked like the feet of two different unfortunate children. And yet from my early unease, those feet became a focal point of our love for her.

One day, with Gabriella lying on her back, Lisa raised her feet and squealed, “Gabriella’s got feeeeeties!”, following with a barrage of kisses, alternating in rapid-fire between her tiny soles. Our daughter found this hilarious. Soon it became a regular game for both of us.

When she was three months old, the orthopedist prescribed AFOs, orthotic devices of a hard plastic with Velcro straps that we used to press the feet into a corrected position. (Recently we found a plastic bag of her early orthotics, the tiniest with red Velcro and others changed to white.) We kept them on her at all times except during bathing, flexing exercises and bedtime.

Shortly before her second birthday, the orthopedist noted that the clubfoot was more awkward fitting into the AFO, and suggested we consider surgery. This was hardly her first – by now we had grappled with cataracts and worse – but this seemed more painful. The surgeon would have to break bones in her foot and reset them with a pin. Just the idea made my head swim.

By now the one constant was the anesthesiologist, a gentleman who lent us confidence. We also had faith in the orthopedic surgeon himself. But such a brutal procedure brought extra anxiety.

The waiting room had become familiar and we settled into our routine, reading and talking and looking at each other or off into space. This one took longer, but at last the surgeon emerged, still in his scrubs. The procedure had gone well.

Gabriella wore a cast from thighs to feet. She had been through so much, yet she smiled at us when we went to see her in recovery. Within days we took her home, and three weeks later they removed the pin – two inches long! – and changed her cast. I marveled at her resilience, still tiny but able to withstand such pain and disruption.

Even today, twenty years later, her feet retain their original profiles, the one with its curled toes and irregular bone structure, the other with the row of tiny purple veins and the flattened sole. But now, it’s their incongruity, their uniqueness, their imperfection, that makes them perfect in my eyes.

Gabriella loves bedtime stories.

From the time she could lie head-to-toe between my palm and the inside of my elbow, I’ve made them part of her bedtime ritual. At first, this was me sharing my love of books, but it soon brought her pleasure as well.

In the beginning, she rested in my arms, then she sprawled on my lap, and now she lies in her hospital bed and I sit at her side, spreading the pages across the pillow. She appreciates the illustrations, which she has let me know the few times we’ve tried books without them.

We sampled much of the standard literature for babies and toddlers, and many classics came and went. A few like Goodnight Moon remain favorites, for both the familiarity and the calming rhythms.

Two standards have long been Sandra Boynton and Dr. Seuss. The former are for smaller kids, but both are full of cleverness and rhyming. Over the years, she’s accumulated more than twenty Boynton books and we still read the majority. As with videos, we’ve found the maturing of her taste in books distressingly slow, but have been pleased to find her interest in Dr. Seuss has evolved from The Foot Book and Hop on Pop to Hortons and Sneetches; the only ones she doesn’t like are the longer narratives without rhymes.

Whatever we read, Gabriella begins clicking at the prospect of “stories”.

Most nights we cover three books, which rotate, and we always end with Boynton’s The Going to Bed Book. It’s likely that I’ve read that short favorite over 7,000 times by now. It goes without saying that I can recite it (and several others) from rote if we are traveling and forget to bring her reading. Even that satisfies her desire for rhythm and routine, familiarity and companionship.

***                       ***                       ***

After stories, we progress to prayers.

We pray for family members by name – not least for Luna, our cat, for whom Gabriella holds a sneaky fondness – and always for people with disabilities and those who love them. Or those who care for them. Or their families.

Nightly prayers are the one place where our faith plays a role in our daughter’s life. In a prior town, in a prior parish, we brought her to mass each week. Back then she slept through the service, only looking about at times with doleful eyes. Around when we moved to our current church, she grew more restless, complaining throughout. Although our new pastor encouraged us to bring her, we became self-conscious even in the crying room. At the same time, I was confronting the likelihood that Gabriella would never wear a First Communion dress. So we got into the habit of going to to separate masses.

After we detail our litany of blessings, we say one Hail Mary and one Our Father. There are nights when, I will confess, I come out of a daydream making the concluding sign of the cross, and I am beset with a twinge of Catholic guilt. Gabriella usually remains silent throughout, a show of reverence.

***                       ***                       ***

I first whistled for my daughter on the day of her birth. I don’t know what I chose; the point was to find peace for each of us, faced with our frightening new life together. But like stories and prayers, we soon forged whistling routines and built music into our nightly bedtime experience.

Most of the tunes I whistle date back to her first few years, and I arrange them into medleys of four or five songs. One medley came from an audiotape she enjoyed; another comprised Mona Lisa and Daddy’s Little Girl, two lullabies, and the Italian standard Mama. Sometimes (often depending on her position), this collection can cause her to become overly excited. (This reminds us of a funny incident from early on when a friend was reaching under a table and banged her head because, she said, she was entranced by how “beautiful” my whistling was. It’s hardly beautiful, but at least Gabriella enjoys it.)

I still whistle to her in a variety of settings, whether I’m holding her in the swimming pool or rolling her down the beach in her big-wheeled chair. Even today, I think this simple act accomplishes the same thing it did the day Gabriella was born, bringing comfort and a special bond.

***                       ***                       ***

Stories, prayers and songs. And the greatest of these is love.

Life’s about the journey, they say, not the destination. I’m not sure if that’s why, but Gabriella is often happiest when she’s in motion.

Our daughter has always liked setting off in our adapted minivan, her excitement building from the time we pull her cape or poncho over her head and tuck it between her back and her wheelchair, engage the harness around her and snap the two lower clips into place, and glide her to the door. But this is something more.

She’s frequently liked rolling down the ramp in our garage, lowered from its clamps on the wall in three parts to negotiate her chair from the house to the driveway, then around and up into the back of our rear-entry van, clicking into place with the EZ Lock and double-secured with the bicycle-brakes behind her chair. But this is something more.

Gabriella has often liked riding down the driveway, whichever of us is in the passenger seat pulling down the center screen and initiating a video or an audio CD, sometimes Mary Poppins but also Sesame Street or Disney songs or the salsa music her Aunt Joanne turned her on to, thrilling at the suddenness of horns or flutes or percussion. But this is something more.

More recently, Gabriella has just liked to be in motion.

And it’s not only road-trips. Over the years, she’s enjoyed rides by overnight train and, once, by cruise-ship. In both cases, she drifted off to sleep within minutes, as compared to the normal two hours without the rocking and creaking of those forms of transport. Our one attempt at flying, when she was eighteen months old, provided less pleasure to her and none to us, but that’s a story for a future post. Now we avoid the airlines, scared off by my decades of experience as a business traveler and by horror stories of wheelchairs damaged in the cargo hold. But I suspect she would like flying as well.

For Gabriella loves motion. And we’ve noticed that her wanderlust has increased in recent years.

When we’re down the Shore, as we were last week, this can be a ride down the bike path in Wildwood Crest, scooting past bicycles of all shapes, skateboarders, runners, and families heading in the opposite direction to the boardwalk. It could be a stroll through the Cape May Zoo, lingering by the snow leopards or bald eagles or marmosets, or in the aviary where the chittering of the birds flitting overhead and onto nearby tree-limbs bring a rash of giggles.

But it’s most likely to be a trip to the ocean, beginning with a transfer to her beach wheelchair still with its narrow indoor wheels, riding to the elevator and down to the lobby with a grin or a whoop at every new-floor beep, stopping in the garage to switch to the big gray inflated wheels, first each in front and then the full-width axle in the back, stowing the indoor wheels in the van until we get back, then pushing up and into the daylight and along a half-block of pavement, rumbling past the dunes to the endless stretch of sand all the way to the surf’s edge, to the lick of the waves against the fore-wheels and, to her delight, her water-shoes. It used to be that was enough.

Now she is more likely to get bored sitting there for long, preferring to be pushed down the shoreline in either direction, past the squawking gulls and terns, and in a less crowded moment, the sanderlings dipping their beaks at the edge of the tide and then scampering away as a flock before daring it again. Rolling into and out of the splash-line makes her happier, and happier still if I’m whistling as we walk.

Gabriella’s probably not focused on the children drawing up from their sand-shovels or their boogie-boards to watch, some of them jealous of this cool conveyance rolling down the beach with the same giant wheels as the ice cream carts. She might not see the grown-ups, more often women, who offer a sympathetic pursing of the lips or a little smile and wave. She’s too busy enjoying the ride.

They say life’s about the journey, not the destination. And Gabriella is often happiest when she’s in motion.

Time had fleeted since we discovered that Gabriella had contracted cataracts, as I described last week. The extraction surgeries went well, general anesthesia and all. But now she couldn’t see anything more than a blur. Lisa had already called the New Jersey Commission for the Blind; they were lovely people, but not the first visitors we looked forward to hosting after surgery.

It wasn’t a hopeless situation. In a couple years, once her eyes stopped growing, the ophthalmologist could do two more surgeries to implant artificial intraocular lenses.

In the meantime, we had our choice of props – glasses or contact lenses. Thus began a comical back and forth.

There were different sizes of contact lenses, and we played it safe and ordered two. We tried the smaller ones first, and the ophthalmologist put them in himself. (The lenses required changing every week, and we saw that this routine would quickly get old, both for him and for us.) Whether due to itching or novelty, Gabriella spread her lids and pressed her fingertips to the surface. Just watching this made my own eyes water, but surgery had desensitized her nerve-endings.

At first, she was unable to disturb the lenses. Then after two weeks, she plucked one out. With a flashlight, we located the sparkle on her knit blouse and put it back in. This time it took only days before she flicked it out again.

Now we stood sentry, hovering at cribside or over the playpen, ready to pounce. Anything to prevent her sticking her fingers in her eyes. “Gabriella, no!” we’d cry.

That only made her enjoy it more.

It soon became impractical to depend on the doctor to put the lenses back in, so we developed our own insertion process. With her flailing her flaccid arms, I stretched her lids apart and Lisa dropped the lens in the gaping eye. One thing we’d already learned was that we could make anything work when we needed to.

In the midst of all this, Gabriella underwent her strabismus surgery to correct the crossing of her eyes. Soon after, we got eyeglasses, bottle-lenses that magnified her empty eyes. Speckled pink frames, amazingly, were the least obvious we could find.

We suspected how she’d react even before they set the glasses on her nose and ears for the first time, the curvy plastic ends wrapping around the underside of her lobes, and we were right. They became her favorite teething toy.

Everything went into her mouth by that point, and her glasses would always be at hand. I watched her snatch them off her face and marveled at her improving two-handed coordination.

Within weeks, we replaced the frames because the earpieces were rubbing raw patches under her lobes. The next pair was looser, and thus easier prey for the snatch-and-gnaw. First we smiled at her quick hands, then we were overcome with silliness.

Time passed, a blur as much for me looking back as daily life must have been for her. The Commission brought her a black box of toys that featured sound and texture. At some point, we went back to contacts. Whichever correction we were using at the time, family and friends helped us guard her eyes.

Then came two more procedures, different from all those before because we planned them months in advance and because they offered hope. We returned to that same hospital, the same ophthalmologist and the same anesthesiologist, but this time we occupied the larger waiting room upstairs. Thinking back to the day of her birth, I tried not to get complacent. When they implanted the intraocular lenses, one nine weeks after the other, we finally completed the cycle we had begun two years earlier.

The new lenses were as artificial as bottle-blonde hair, but unlike the cataracts, unlike the distorting glasses or the elusive contacts, there was something magical about them. She seemed happier, more responsive. They sparkled when the light caught them. And after the second insertion, both of her pupils looked perfect once more.

First of two parts.

“She has cataracts.”

Sitting in my cubicle, I heard Lisa’s staggered breath in the phone. This had been a routine doctor’s appointment, so I hadn’t taken off from work. “Excuse me?”

“Cataracts. The baby has cataracts.” I asked what that even meant. She reminded me of her grandmother. “It’s a filmy coating over the lens of the eye, only hardened.”

“Isn’t that an old person disease?” I said.

“Usually. Except in Gabriella’s case.”

Our daughter was nine months old. The ophthalmologist said they’d appeared since our last visit. I felt sick.

I asked my wife how they looked, but I knew before she answered. “It’s like a milky covering over the pupil.”

I couldn’t believe it. A month before, I’d been sitting with Gabriella at Lisa’s sister’s condo, overlooking the swimming pool and beyond, the endless sandy beach and the ocean surf. In the salt-air, I rocked my daughter back and forth and whistled, just as I had since the day of her birth. The twilight made her hazel eyes glow green, but I remembered, too, that her pupils looked almost milky. At the time, I had thought it a trick of the light.

This meant surgery, excising the cataracts over each eye and then inserting intraocular lenses to help her maintain at least some level of sight. Two surgeries, one for each eye. Each requiring general anesthesia. I feared one whiff might be too much for her, barely ten pounds yet.

The doctor called it congenital cataracts, even though they didn’t show until she hit nine months old. This turned out to be a positive; because the cataracts weren’t present at birth, we got a better prognosis than we would have otherwise.

There was one other silver lining: no child with Opitz trigonocephaly, the diagnosis we’d recently received from the geneticist, had ever had cataracts. This increased our hope that the diagnosis, with its three-pronged prophecy of doom, was wrong.

“He wants to do the first one soon. Next month if possible.”

“And then the strabismus surgery second?”

“Then the second cataract surgery. One eye at a time. Then he’ll do the strabismus after that.”

Strabismus is the contracture of the eye muscles that results in the crossing of the eyes. I had noticed in that first year that it wasn’t uncommon in children with disabilities. I think I wanted it corrected quickly because crossed eyes were the only sign that my daughter had mental delays. But we couldn’t hide those delays forever, if she even had them. Maybe I just didn’t want it to be obvious until I’d learned to accept it.

Then she hit me with the consequence I hadn’t grasped yet. “She’s going to be legally blind.” I didn’t understand why. “They have to take the whole lens out. They can replace them, but her sight will be limited, and even that won’t happen for a couple years. She’ll have to wear big thick glasses or contacts in the meantime.”

So four surgeries then.

This wouldn’t be the first time that Lisa had to reinforce a diagnosis and the resulting treatment. It was still all new to both of us, but she had the medical background so she took on the role of translator.

A few months earlier, after receiving the diagnosis from the geneticist, I had realized my daughter would never be able to read anything I wrote. Now I feared she wouldn’t even see the words on the page. Why this was worse, I can’t say, but it felt like salt in the wound.

The ophthalmologist was one of our favorite doctors, with an excellent reputation and bedside manner. We were relieved that he that would perform the surgeries, but we both dwelled on the prospect of anesthesia.

We arrived at the hospital at seven a.m. Gabriella had been unable to drink since midnight, so I distracted her with rocking and whistling and with her hanging toys as we got her ready to go. It was an ambulatory procedure, allowing us to bring her home the same day. That didn’t seem so bad.

The nurse brought a Versed cocktail, which Gabriella welcomed as something liquid until she realized it wasn’t milk. She gagged, but eventually it went down. Within minutes, her head lolled.

Lisa and I decamped in a waiting area. We were alone there.

We tried to distract ourselves, books and magazines and calls to family. Eating provided no solace, but it killed time.

Three weeks later, we sat in the same seats, with the same transient nurses and volunteers. Just as he had the last time, the anesthesiologist comes in first, after about an hour, in green scrubs and a mask pulled back over his head. “She took the anesthesia well,” he told us.

The ophthalmologist came in after a half-hour. Again he was smiling, the procedure having gone as smoothly as the first one. Again we were relieved, although we had another nagging fear, that like before her pupil would smear and spread like an egg in a frying pan. I felt shallow worrying about that – at least they got the cataract out – but with everything going against her, was it too much to want her eyes to come out unblemished?

This time, when we reached Gabriella with a white patch over her eye, we found that the pupil remained intact, an unbroken black yolk behind her expanding smile. It’s the little things.

To be continued…