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Where I Found an Unexpected Nostalgia

July 30, 2018 by Paul Van Heest 2 Comments

Nostalgia is a funny thing. I’ve experienced it in memories of childhood, of our early marriage, of good friends, but I never expected to find it when thinking back to our daughter’s earliest surgeries, moments filled with shock and apprehension. Yet this week that’s what happened.

On Friday, Gabriella had an appointment with the ophthalmologist. She sees him only every couple of years, which is a good sign. It was to be a late morning visit, and Lisa reminded me that his office is often crowded, the waits long.

This would be the first time I had accompanied them to his office in twenty years. On the roster of medical specialists our daughter has seen over time, he has long been routine.

It wasn’t always that way. We discovered a milky blurring when she was six months old and learned soon after that she had cataracts. She was already seeing an ophthalmologist for strabismus, and he performed four separate surgeries for this new problem, two each to remove the cataracts and to implant intraocular lenses, plus a fifth to correct the crossing of her eyes.

The two excisions were her first two operations, her first exposure to anesthesia, our first exposure to the surgical waiting room. By the time he had inserted the second artificial lens, however, our daughter’s medical situation had grown more severe. Our frustrations over getting her to accept glasses or contact lenses paled alongside the need to break several bones to correct her clubfoot. Or multiple surgeries to remove a tumor affixed to her skull.

All of this is two decades in the past, but it still casts a long shadow over our lives. And yet I looked forward to this doctor’s appointment.

In the late morning, we got Gabriella ready and into our adapted minivan. The office is half an hour away, and we arrived fifteen minutes early. As I had before, I appreciated that he was the rare pediatric specialist who continued to see our daughter after she turned twenty-one.

Soon they called her name. A medical assistant led us into an outsized examining room. More than the handicap parking space at the end of the long row of exterior doors, more than the waiting-room with the bead-maze toys, this spot brought back memories. All around were pieces of equipment I recognized, even if I had never learned the names of any. And my déjà vu increased when her doctor came in.

Life with Gabriella has introduced us to the best and the worst of the medical profession. We had a geneticist with a miserable bedside manner. One surgeon couldn’t be bothered to let us know that the malignant frozen section was wrong, that our child didn’t have cancer. But there have been many more amazing physicians, neurologists and orthopedists and neurosurgeons, and this man, Dr. Engel, Gabriella’s only ophthalmologist over all that time.

We looked at each other with big smiles, we shook hands, we exchanged pleasantries. Two decades had grayed his temples and left a few lines on his face, but those kind eyes brought that spark of nostalgia. The eyes of an eye-doctor, they had reassured us and buoyed us and comforted us in those first unstable days.

Back then, his practice was small. When we met, he extended his hand and said, “Call me Mark.” Of all of her doctors, he was the one that felt like a colleague. A friend even.

He examined her on Friday with the same gentleness and easy command I remembered. Unlike the visual exams I’ve experienced, there was no eye chart with rows of shrinking letters, no refraction test with the fancy device with all those rotating and clicking lenses. He assessed her vision using measurements of the eyes, he puffed air to evaluate the risk of glaucoma, and then he dilated her pupils and we sat back in the waiting room before returning for him to examine the backs of her eyes. He also checked the intraocular lenses, which have held up well since she was three.

Then it was time to say farewell until her next appointment in two or three years. We shook hands again and headed out, and I felt a warmth I’ve rarely known in medical offices.

Nostalgia comes in the most unexpected places.

 

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Stories

When the Windows to the Soul get Fogged, Part 2

July 17, 2017 by Paul Van Heest No Comments

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.

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Stories

When the Windows to the Soul get Fogged

July 10, 2017 by Paul Van Heest No Comments

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…

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