For a 21^st century kid, Gabriella has limited forms of entertainment, with most requiring personal attention. We try to get her out for activities or just for a walk, but like every family, we have plenty of time where no one is available. So our daughter watches a lot of videos.

This is something I used to be guilty about: do we let her watch because she enjoys it, or because it’s convenient to us? In the end, probably some of each.

Over the years, I’ve wondered if her limited patience and attention span resulted from sitting her in front of the TV too often, or rather if those attributes led her to enjoy short videos. While we have a large collection, but Gabriella has her preferences and she watches frequently enough she’s seen some thousands of times. We’ve become numb to the repetitiveness. In fact, each of us has lines that make their way into normal conversation, triggering a laugh of recognition.

Within the first few years, she grew out of the Teletubbies and Spot, but Barney was persistent. When at last Gabriella rejected the purple dinosaur, we chucked every Barney video in one day.

She still loves Elmo and other characters on Sesame Street, and we’ve gone through four copies (VHS and DVD) of a Disney Sing-a-Long video that’s essentially an infomercial for the theme parks, but as she’s grown she’s developed an appreciation for Disney movies. Most are animated and brief, but her favorite is Mary Poppins, a live action film that clocks in at well over two hours.

Whether watching the full-length movie or listening to the soundtrack that sets the scene for many of our car rides, Gabriella becomes ecstatic at “A Spoonful of Sugar” and “Supercalifragilisticexpialidocious”. So when her grandma told us that the Paper Mill Playhouse was putting on a sensory-friendly performance of Mary Poppins, we were all in.

Over the past decade, we’ve taken her to several children’s movies in a sensory-friendly environment in our local cinema. This is an setting designed for children with autism and other special needs. They turn the lights up and the sound down, and best of all, there’s tolerance for noise and chatter in the audience. Gabriella has enjoyed The Lorax, Frozen, Inside Out, Zootopia and others (although, admittedly, sometimes she’s been ready to leave before Lisa and I, because we wanted to see the ending).

Mary Poppins was the first time we brought her to a live sensory-friendly performance. The Paper Mill, a respected regional theater, had designed an environment similar to the ones we’d enjoyed at the movies. They also offered a room where for children who found the in-person experience too intense could watch the performance on a screen. Still, the play’s length and format made us anxious.

On the way, I told Gabriella several times that we were going to see Mary Poppins. She responded with clicks of joy. With the help of a group of friendly ushers, we found our seats in the last row of the orchestra section, along with others in wheelchairs and their caregivers. In the minutes before the curtain went up, there was a buzz of excitement in the audience.

As is often the case in our house, our plans had gotten upended. We purchased four tickets for Lisa, Grandma, Gabriella and me, but my mom was ill and unable to attend and Lisa had to deal with a situation at home, so as the play opened, we were down to Gabriella and me. Even more because it was her idea, we missed Mom that day. But Gabriella beamed when Lisa got there earlier than expected, joining us for the rest of Act I and the full second act.

The stage-play mixes elements of the Disney musical and the novels of P.L. Travers, but we had only seen the film (albeit hundreds of times). Some of the songs were the same as in the movie while others were unfamiliar, but Gabriella sat contentedly even during the newer music.

A lot of the children seemed to be in a similar situation. Some sang along with the songs from the movie, and many rocked and bobbed in their seats, making cries and shouts. As for Gabriella, she got excited when Mary made her first appearance and soon after sang “Jolly Holiday”. When she followed with “A Spoonful of Sugar”, our daughter neared what Lisa and I call “the cusp”, a fine line between laughter and tears. Luckily, her mom had packed her noise-reducing headphones, which calmed Gabriella during the louder moments.

This rendition of Mary Poppins was a big success for Gabriella, and we’ll continue to look for new sensory-friendly experiences. I recommend them for anyone looking for a welcoming and non-threatening environment. They offer a chance for families like ours to feel a little more normal.

I had the fortune to serve as a senior leader for most of two decades at a great mission-based organization. Long a student of leadership, I benefited from working alongside some amazing mentors and colleagues. My career offered many opportunities, leading strategic initiatives and managing products and businesses. But I believe my life as Gabriella’s dad also gave me insights that helped me become a better leader. Here are five lessons about leadership and life that I learned from my daughter:

1. Expect the Unexpected: Lisa and I are planners, and we had laid a lot of groundwork for our first child. Visions of my soon-to-be-born daughter in a communion dress filled me with joy. Then Gabriella arrived, presenting us with challenges we could never have imagined and reshaping my conception of the future.

Contingency planning is vital to many activities, but no one can anticipate everything. It’s more important to adopt an attitude of flexibility, so that when a Black Swan event happens, we’re not frozen. I can’t say I’ve always been as agile as I wish, but I try to keep an eye on the big picture. More often than not, that has enabled me to stay calm in the face of the unexpected.

2. Be Optimistic: Gabriella’s diagnosis at six months old was a paralyzing outcome. Instead of bringing hope and a path of action, Opitz Trigonocephaly offered only variations of doom. But we refused to give up, doing our best to remain upbeat. Our faith and optimism were rewarded when the geneticist recanted the diagnosis.

It’s easy to get dragged into the doldrums by bad news, whether in the media or our private lives, but maintaining a positive outlook helps. It doesn’t change the outcome, but it makes it easier to cope. And as ironic as it sounds, sometimes optimism means saying No and refusing to allow despair to win out.

3. Express Your Gratitude: Gabriella clicks to show she’s grateful, for a hug or for lunch or just for attention, and those clicks are sought after by family and friends. They also remind me it’s important to say Thank You.

The pragmatist might consider that being thankful increases the likelihood that the person being thanked will do another favor in the future, while the moralist might say expressing gratitude is just the right thing to do. Whatever the motivation, it’s good karma. And it’s never too late. While it’s better to offer acknowledgement soon after we receive the good deed or gift, I have felt pleasure as well at a Thank You for something I did a long time before. Almost as much pleasure as I get from one of Gabriella’s clicks.

4. Maintain Perspective: Our life with Gabriella has been a whirlwind of challenges and tough news. It’s also brought amazing rewards, as I’ve shared in some of the posts to date. One benefit of all this excitement is that it’s brought perspective to everything else.

When I’ve suffered disappointments at work, failed deliverables or squandered opportunities, I try to ask myself “What’s the worst thing that can happen?” No matter what, it’s never more daunting than what we’ve faced at home. This thought process helped me overcome my fear of speaking in public, despite being an introvert, thinking that no embarrassment was worse than some of the scares we’ve had in the hospital and elsewhere. With that said, sometimes I look back and consider how I might have done a better job maintaining my perspective.

5. Find Life-Work Balance: When Gabriella went into the hospital with dehydration, I realized that my life had changed for good. Everything that had seemed important a few weeks before paled in comparison with doing whatever it took to keep her alive. We altered our routines entirely, and while she was back in the hospital, Life took precedence over Work.

It’s easy to allow our careers to overwhelm everything else in our lives, and sometimes it’s appropriate, whether for client installations or project milestones or other big events. Likewise, I learned that week that our personal and family concerns can absorb all our attention. But I’d argue that those are the easy decisions. The key is what we do the rest of the time. I prefer to put life first as opposed to the usual “work-life balance” construction, just to shake us out of our norms, but the most important word is balance. I believe success requires navigating an equilibrium in one’s life: if you can objectively look at your week and feel balanced, you probably are.

Today is Father’s Day. From that first June after Gabriella’s birth, it’s been a day I’ve cherished.

In 1997, it came as a relief to have exceeded six months and still have our daughter with us. By the second Father’s Day, we had bypassed a year and had begun to put the prophecy of the diagnosis behind us. And the third third-Sunday-in-June brought a new blessing, celebrating our “normal” son as well as our “unique” daughter.

Those early Father’s Days were three-generation affairs, but far too soon we lost Lisa’s father, and then we lost mine after a seven-year battle with Alzheimer’s. Both were ideal role models, not only devoted fathers but humble, generous men.

I think what I love most about Father’s Day is that I get to experience it with my two so-different children. It’s a time to celebrate their differences and what that means for my life as a dad: the writing prizes and the midnight diaper changes, settling him into his new college apartment and hunting for her new bath chair, Skyping while he is studying abroad and walking her around to keep her calm in the doctor’s office, hearing about his day at his internship and reading about hers at her day program.

I get to share postmodern literature with Alexander and Sandra Boynton board books with Gabriella, watch Saturday Night Live sketches with my son and Sesame Street segments with my daughter.

We celebrated graduations with our son at every step along the educational spectrum, and a single big event for our daughter when she aged out of Lakeview School. Sometimes we push him to say a little more; sometimes we plead with her to whinge a little less.

One thing I frequently have to re-learn is balance. That means not smothering him while always snuggling her, but not neglecting him in the wake of all we need to do for her. It means giving him enough attention when she’s demanding our full focus, and it means challenging her enough while giving him the space he needs.

When I was younger, I looked forward to being a father. I could never have foreseen the altitude of the joys or the depths of the terrors.

Today is a day to reminisce and to anticipate. Alexander won’t be up until late morning and will need some time (and coffee) to shake off the night. Gabriella was up before we were, and she greeted our arrival downstairs with her usual clicks and delight.

Ours is a different sort of family, blessed with riches and constrained by limitations. Perhaps the best part is having a partner to share the whole crazy tangle of our life. While I couldn’t be a father without these two amazing kids, I also couldn’t be their Dad without their incredible Mom.

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.

First of two parts.

Looking back, so many of the big events in Gabriella’s infancy involved visits to the geneticist’s office, from the diagnosis to the Level II ultrasound, and our first trip was no exception.

The geneticist had been there at the beginning, sitting in the chair across from us in the hospital, explaining that Gabriella would need an MRI of the spine, a kidney ultrasound and a skeletal survey, and enough X-rays that the head of Radiology finally declared, “No more radiation for that child.”

So we moved on to bloodwork. The geneticist said a chromosome analysis would help rule out certain syndromes and genetic conditions.

We packed our daughter into the car-seat and drove to the genetics center. Gabriella sobbed when we arrived, as if she knew they would have to stick her multiple times. She was so tiny, it was rare that anyone could find a vein the first time with a needle, and they fared pretty well, needing only two tries and leaving only one bruise. It’s a terrible thing to hear your child shriek with pain and to be unable to do anything to ease her suffering.

When at last they brought her back to us, Gabriella was still, even lethargic, worn out by the ordeal. “While we’re here,” Lisa said. “Would you mind weighing her?”

The genetic counselor led us through the hospital halls to the weighing room. We lifted her onto the scale: four pounds, nine ounces.

“But she was six-two when she was born,” I said.

“It’s natural for a baby to lose a little the first few days,” the genetic counselor said.

I looked at Lisa, numb with dread. “She was down to five-seven by the time we left the hospital,” she said. “But this is almost another pound.”

And that had been a week earlier. She should have been gaining weight back by now.

The genetic counselor could say only that different scales gave different readings. We thanked the genetic counselor for her help, and hurried to our pediatrician to weigh her on the same scale as our last time. On the way, we questioned whether that one final blood-letting had been enough to topple her over the edge.

We also wondered what we had done – or not done – that had pushed her to the edge in the first place.

It was at the pediatrician’s office that I learned another horrid word: tenting. Gabriella’s abdominal skin was so slack that when the doctor lifted it, it formed a peak, then settled. Tenting is a sign of advanced dehydration.

She weighed four-twelve on this scale, a full pound less than during her recent check-up. And she was suddenly lifeless, as if drained of her blood.

The drive to the hospital was again a blur. (In those days, we rushed from one medical facility to the next, and my mind fought to keep up.) As we did so many times, Lisa took her inside and I parked, then headed to Admitting.

I remember that the only candidate waiting before me was a small African American girl. She looked as scared as you’d expect a tiny person to look in a big room. I received immediate attention, while she waited (for a parent or guardian, I assumed). Then a white woman bustled in, shouting about the neglect of foster children. I sat red-faced, lamenting babies born as sick as ours into poor families, without medical insurance. It was not the last time I felt shame over our healthcare system.

Then I returned to Gabriella. I prayed that we wouldn’t lose her, but I also wondered if God wanted her back.

When I got upstairs to Gabriella’s room, I saw tears of fright and frustration around Lisa’s eyes. I was so attached to our small, damaged girl. I rejoiced in our moments of intimacy: standing with her on my shoulder and rocking from side to side and whistling to soothe her on her second day of life. The adoration in those tiny eyes brought a rush of parenthood more addictive than anything I had ever known. Even though questioning God’s intentions summoned a tinge of Catholic guilt, I decided I wasn’t ready to give her back.

To be continued…