I often wonder what it must be like to be you.

What must it be like to be stared at or whispered about or pointed at in public, or again to be treated like a curiosity or as somehow not relevant…and yet to ease the anxiety of those around you by responding with only a sweet smile?

What must it be like to be left unchanged for too long even when you voice your discomfort, or again to be ignored in a group because too much is going on and you languish in front of a video, or to be the one person in the room that a newcomer doesn’t say hello to upon entering…and yet never to hold a grudge?

What must it be like to depend on others to dress you and move you from your bed to your chair, and to brush your teeth and wash your face, and to puree your lunch and feed it to you on a spoon…and yet to teach those of us who offer you our service modesty and humility and patience?

What must it be like to have no way to articulate frustration or pain, hunger or exhaustion, satisfaction or gratitude…and yet to express yourself in a language of clicks and sounds and smiles that fills me even as a writer with a joy I can never get from traditional words?

What must it be like to endure more surgeries in a few years than most people do in a lifetime, to suffer seizures that take over your mind and body and leave you beyond your own control, to undergo breathing treatments from the nebulizer and get medicines injected through your feeding tube all day and have your every breath and heartbeat monitored all night…and yet through it all to exhibit a perseverance that few marathon runners can match?

What must it be like to have such low muscle tone that you’ll never walk and will always be (as a kindly doctor told us early on) a good sitter; that you can grasp little, lift less and manipulate least of all; that you struggle to swallow textured pureed foods…and yet to exhibit a kind of strength that goes far beyond the physical?

What must it be like to have even those of us who adore you most underestimate you because your unmet needs are simple or surprising…and yet to offer only unconditional love?

What must it be like to inspire many with the smallest gesture, to instill devotion without asking for it, to encourage generosity through your presence, to teach perspective in times of difficulty…and yet to take no pride or claim no credit?

What must it be like to be viewed as imperfect and take no offense…even though you’ve achieved a perfection we can’t appreciate in this world?

What must it be like? One can but wonder.

This week we took Gabriella down the boardwalk again.

Over the years, she’s gone from being pale-faced and intimidated by the noise and crowds to showing a sense of wonder, laughing at the binging and beeping of the carnival games, watching the people as they pass. As always, she enjoys the motion, but I suspect she also harbors memories of past trips. I know I do.

The most vivid for me started in the usual way. The four of us made our way along the concrete path alongside the boards, centered around Gabriella’s wheelchair. She was younger then, seven or eight years old, and it was summer, so near Alexander’s sixth or seventh birthday. She was complaining, as she often did, more uncomfortable perhaps because of the curvature of her spine and the low tone of the muscles that sagged around it. Even without her whinging, we were a spectacle, and those who walked in the other direction got their money’s worth.

Staring people have always bothered Lisa and me. It wasn’t enough that we felt a little unsightly rolling along; when she complained and we had to shush her and plead with her and pull her over out of the main traffic to soothe her, we became more susceptible to looks and whispers.

The small children never bothered us as much as their older siblings and their parents. There is little excuse for an adult staring at a girl in a wheelchair.

Short of making (more of) a scene ourselves, there was little we could do about it. I’ll admit I’ve stared back, even to the point of craning my neck and turning around to glare at someone who’s gone past us. Sometimes they are still looking in our direction, but just as often they’ve moved on and I’m the one left with a sheepish expression.

At times the staring would irritate her brother as well. “Why do they have to stare?” he would demand. How do you answer that?

On this particular evening, we rolled up the boardwalk, trying but failing to ignore the prying eyes. It was warm but not oppressive, busy but not mobbed. I remember Gabriella’s whining and Alexander’s frustration, and we considered turning back. We had stopped in front of one of the many attractions promising prizes for skill.

That was when a small girl with a blonde ponytail approached, holding her mother’s hand. She presented herself before Gabriella’s chair and, with great pride, handed her a stuffed animal. Our daughter reached out an arm but was unable to grasp the plush toy, so Lisa accepted it from the girl. “She won it,” her mother said. “She wanted your daughter to have it.”

From the time she was a baby, many people have given Gabriella gifts, a lot of them strangers, from children to young men to elderly women. She’s received religious medals, a friendship bracelet, dolls and stuffed animals. The memories blur with one another, the different givers and gifts centered on the deep gratitude we always feel. I’ve noticed that the giver often has an awestruck look that makes me wonder whether they’re getting even more from the exchange.

But of all the gifts she’s gotten, that stuffed animal on the boardwalk is the one I most remember. Time froze for an instant, then the child, her bravery expended, turned into her mother’s knees. As they walked off together, I got the sense that people were staring again, but I couldn’t see them as clearly this time because of the tears in my eyes.

As we pushed Gabriella along the boardwalk this week, I recalled again that girl, forever bound to our daughter by her act of courage and generosity. By now she’s a young lady, and whatever path she takes in life, whether as a mom or a teacher or a leader or a citizen, it cheers me to know her influence will fall upon others.

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…

Last week, I described taking Gabriella for her first visit to the geneticist’s office, only to discover that she was dehydrated, and how we rushed from the geneticist to the pediatrician to the hospital. Now we waited with her in the Pediatrics Intensive Care Unit, or PICU.

We had decided we wanted our daughter to breast-feed. But none of us dreamed that her hypertonic condition – extreme muscle weakness – affected not only her arms and legs but those in her throat as well. Her inability to suck prevented her from nursing effectively, despite her ability to express a lickful of milk and nip at the breast for the better part of an hour.

With patience and care, Lisa pumped breast-milk and we bottle-nursed her back to health. After a couple days, we moved upstairs from the PICU to the Pediatric Loft and stayed for a week. One nurse tried to help breast-feed her with an elaborate network of tubes, but in the end resorted to a latex glove to try to pry Gabriella’s mouth up despite clenching her lips tight. Another nurse had us in hysterics saying “I don’t want that glooooove – get away from me with that gloooove!”

We spent that week in the Loft, sleeping on cots with mattresses like corrugated cardboard and happy to have the access. I drove home each morning at five to shower and dress and pick up whatever Lisa needed for the day, hustled back and brought her breakfast. Then I locked my heart in my briefcase and walked to the train station.

It’s amazing how we adapt to disruption. Soon I was waking up before the alarm sounded on my PDA. I did the drives on auto-pilot. I knew the layout of the hospital and the hours of the cafeteria and the gift shop like any employee, not to mention the locations of a half-dozen nearby take-out places.

I also learned that people would be highly respectful, almost awestruck by our situation. Colleagues asked for updates the first day or two, then backed off to give us privacy. I appreciated their interest, but I longed for normalcy.

At last, she gained enough weight that the danger had passed (at least this danger). We came home with a strange sense of triumph, as well as exhaustion.

We settled into a new routine. We defrosted one-ounce bottles and recorded Gabriella’s intake to the tenth of an ounce. We kept records, too, of wet diapers. Our pediatrician loaned us an old-fashioned scale, an iron monster with a rusty underside that turned the lower pocket of my green parka a sallow orange just carrying it in from the car, but we were thrilled to have it, to not have to drive obsessively to his office to keep weighing her. This allowed us to weigh her daily (twice a day at the beginning), to make sure she hadn’t dropped even a fraction of a pound.

It was no way to live, but that too became normal in the bizarre cycle of our new lives.

So many of us had prayed for her life, but Gabriella is as tough as any adult – tougher, as we would learn in the months to come – and I’ve always believed it was her own strength that saved her life.

This weekend was the Lakeview prom.

Gabriella spent eighteen happy years as a student at Lakeview School. Every morning, she boarded the small yellow bus in the cul-de-sac in front of our house and headed off with whoops of joy. She had amazing teachers and therapists at the school, and so many friends. Everyone knew her, from the principal and administrators to the nurses and aides, even those in classrooms she had never attended. They called her Gabby, and they clearly loved her.

Last year, at twenty-one, she graduated from Lakeview. This separation was as daunting for her mother and me as it was for her, and while she has moved on to a new daytime program, there will always be a special place in our hearts for her school. Lisa remains active in the parents association, and the three of us have returned several times this past year, for a variety of reasons.

And yet I was especially looking forward to the prom.

Unlike at most schools, the Lakeview prom is not limited to seniors and juniors, but is open to all of the older students. But best of all, they welcome back alumni. They hold it on a Saturday afternoon at a welcoming venue called The Pines Manor where our kids and their families enjoy respect and kindness.

So this past Saturday, Lisa and I, both of Gabriella’s grandmothers, and her brother Alexander accompanied her to her first prom since her graduation.

As in prior years, she flinched and her upper lip trembled at the loud music when we arrived, and then she settled in and became accustomed to the volume. As in prior years, she and Lisa paraded about as celebrities known to many. As in prior years, she and I danced and she had a wonderful time.

And as in prior years, they had a special ceremony in the latter part of the afternoon. All the kids who will graduate in the next few weeks come to the center of the room, most in their wheelchairs and each in the basking love of their families who form a circle around them. Everyone else gathers round and sings along as the DJ played That’s What Friends Are For.

The first time we went, when Gabriella was sixteen, I found a wistfulness in the song and I admired the camaraderie of the loved ones ringing their children. With each ensuing prom, I noticed that many of those parents were crying. By 2015, with Gabriella’s graduation one prom away, I felt tears in my own eyes. Last year was different: where I had expected to cry I felt only shock that she would be leaving behind such a magical part of her life.

This weekend I knew better. I saw the expressions on those kids and their parents from a different vantage point, with the sad wisdom of those who have seen the daily joys of Lakeview School recede on the horizon. But I also saw the faces of the families of the Lakeview alumni, always welcome to come back and share this special spring day and a taste of the cherished past.

And so my tears this year were for our belonging.