Each one of these kids is unique, and that can be the scariest thing of all.

I had worked my whole career in financial services and Lisa was a physician assistant, so we divided up the complicated stuff. I took care of savings and investments, and she handled all things medical. I had never liked science, so I was relieved that she dealt with doctors and labs. But after we had Gabriella, I had no place to hide.

Gabriella had a club foot, so we saw an orthopedic surgeon. She developed cataracts, so we went to an ophthalmologist. Over time, we took her to the neurologist and the gastroenterologist, the nephrologist and the urologist, the pulmonologist and the physiatrist.

And then there was the geneticist.

When Gabriella was six months old, we got a call from her geneticist, who had come up with a diagnosis. We became hopeful, because not knowing left us with so many unanswered questions. Would her lungs be more at risk, or her heart? Would she develop precocious puberty? Would she be susceptible to seizures?

Would she ever walk or talk?

So we went to hear the Word. With authority, the geneticist told us Gabriella had Opitz Trigonocephaly.

Huh?

Even for Lisa, this was gibberish. Opitz was a genetic syndrome so rare, there were less than 40 known cases in the world. Our geneticist proposed to write an article about discovering Gabriella’s condition, but only after we understood what Opitz Trigonocephaly meant.

First, Gabriella would be “profoundly mentally…delayed”, except the geneticist used the R word. (Even 22 years ago, it hit me like a slap.)

Second, she wouldn’t live to be a year old.

And third, there was a one-in-four chance that any future child would have the same syndrome.

We went numb.

The diagnosis put my natural optimism to the test, and I rejected it at once. Some of the traits the geneticist had ferreted out? I didn’t see them. Trigonocephaly refers to an irregular shape of the head, but Gabriella’s head looked no different from my own. A cleft in her ear-lobes, where? Lisa was also skeptical. We spent months convincing ourselves that the geneticist was motivated by hunting big game. But what if we were wrong? We reread the reference materials. We considered flying to Utah for the annual conference with Doctor Opitz and other “Opitz families”.

As Gabriella’s first birthday approached, we prayed for a miracle, or at least a misdiagnosis. With relief and vindication, we held a big party to celebrate this milestone. Didn’t this prove she didn’t have Opitz?

We hoped it was all fictitious. Maybe her brain would be unimpacted. (We already feared that she would never walk – as one of our doctors said early on, “Some kids are just good sitters” – but I pictured her as a brainy kid in a wheelchair.)

We didn’t even dare to think about the prophecy for another baby.

As time passed, we became convinced that our deepest wish had come true, and Gabriella didn’t have Opitz Trigonocephaly. Two and one-half years after that initial meeting, the geneticist reached out to us to confess that, as we had prayed and dreamed and hoped, the diagnosis was wrong.

We already knew.

Over the next twenty years, we’ve seen other geneticists, done DNA tests and blood work, tiptoed into other doctors’ offices unsure of what we might learn, but none has ever offered another answer. We’ve become more comfortable treating the symptoms as they arise, without a need to know the grand design. And we accept that Gabriella has an undiagnosed syndrome, a genetic anomaly, a mystery all her own.

For in the end, each one of these kids is unique.

We live in a society that likes to know what to expect.

The online world is full of spoilers, for movies, for TV shows. We love forecasts, and we want details.

We don’t just want to know the temperature tomorrow, but the precise time the rain will begin. It’s not enough to know who will win the AFC Championship game: will they cover the spread, or beat the over-under? Our obsession with wanting to predict the future extends to life as well, and to having a family.

So when my wife got pregnant 22 years ago, we did what millions of Americans have done: we bought What to Expect When You’re Expecting.

And we thought it was great. It told us the symptoms Lisa would experience in the first trimester, the second trimester, the last week before the birth. It told me, as the dad, how I would feel – and it was spot on. As it foretold, I began to envision what my child might be like.

Because we’re both planners, the ultrasound offered a special kind of news, and we discovered that we were having a girl. And that made me even more excited.

Lisa and I are Roman Catholic, and I had always looked forward to First Communion Sundays. All the boys and girls who had received the Eucharist for the first time would come to mass in their suits and white dresses. I imagined the day when our daughter would wear her First Communion dress to church.

Great anticipation built up in those final weeks. And until the day she was born, things went by the book.

And then it all changed.

Gabriella’s birth was unlike anything in any guide. I’m not going to talk about that day here, but I will in a future post. Suffice it to say, from her first hours, we knew something was wrong.

By now we had our copy of What to Expect the First Year. In the weeks and months that followed, we watched for those impending milestones…but they didn’t come. And when they did, they weren’t when or what we expected.

Suddenly, I began to dread First Communion Sundays. I would tear up at the sight of those little girls in their dresses, afraid that Gabriella would never wear one of her own. And I was right. The year she would have celebrated her First Holy Communion, I knelt in the pew, my hands crushed together, alone. But the following year, again confronted with children in suits and dresses, something unexpected happened: I felt a little more at ease. Another year, and our son Alexander received his First Communion. Gabriella was there to share our pride.

Since her baptism, our daughter has never experienced sacraments that mark milestones in a Catholic’s life. I understand now that it doesn’t matter, as her place is assured. And that brings me peace. For I expect that someday, if I find myself before the pearly gates, it will be because of Gabriella. And she’ll be there to welcome me across the threshold, dressed in the white of the angels.

I believe our world needs a sanctuary for parents and family members of people with disabilities, and for those who want to know more about our lives. This site is an oasis in a world that is learning a little at a time about those like us and the amazing people we love.

I offer insights gathered in more than twenty years as father to both a beautiful daughter with multiple disabilities and a wonderful son with all the potential life holds, together with decades as a leader in a mission-based organization. There have been times when life has taught me about work, and others when work has taught me about life. It’s a different way to think about the work-life balance.

As an introvert by nature, for many years I kept my home experiences inside. Then one day I was invited to share with friends and colleagues across my company. I called my talk Things My Daughter Taught Me. Despite having spoken about business many times before groups large and small, I found it daunting to talk about my family life, infused these many years by the exceptional child we’re raising. And yet hundreds of people listened for an hour, with many more watching a recording afterward. I was truly humbled and deeply grateful.

I became inspired to share more of what my daughter taught me. And so this site was born.

I know many others out there have experienced the boundless love of special people like Gabriella – each situation unique and yet sharing surprising similarities – whether as parents, siblings or family, as committed teachers or therapists or medical practitioners, as volunteers, students or friends. I invite you along on this incredible journey, and to tell others you think might benefit.

In our world today, time is precious. Thank you for every moment you devote to Things My Daughter Taught Me.