Today is Super Bowl Sunday, with a lot of focus on winning. We live in a culture that values winning, in some ways to too high a degree. It makes me wonder, what is winning in a family like ours?

Since childhood, I’ve been a fan of the New England Patriots (my apologies to all those Patriots-haters out there) even though I lived in New Jersey. As an eight-year-old, I chose my football team with a logic not unlike amateurs at the racetrack betting based on liking the horse’s name: I liked their helmets. For my first 30 years following the Pats, I endured disappointment and embarrassment, but over the past sixteen seasons we’ve enjoyed a lifetime’s worth of winning.

I’ll never forget the first one, in early February 2002. Gabriella was seven years old, and she sat in an adapted stroller. We used to put her to bed by eight o’clock, although even then she took hours to drop off. But the Super Bowl started around 6:30, so I had her sitting beside me as I watched. Every so often, we’d sing along to Rock’n Roll Part 2. When we reached the Hey! parts, I’d lift her arms and she would giggle, bringing me a joy as vivid in my memory as the game-winning final drive.

In sports, as in much of life, winning is cut-and-dried. Growing up, we all gain experience with winning and losing. As children, we contest races and board games, and as we grow older we compete in sporting events and for scholarships, and then in adulthood we seek to win the hand of the person we love or success in our chosen careers. Lisa and I have tasted such victories in our lives, and we’ve seen Alexander begin to enjoy his own triumphs.

Winning is different for Gabriella.

We knew from early on that she would never win in the traditional sense. Cognitive delays meant she would not capture any academic prizes, nor would she be mainstreamed into the public school system. Her low muscle tone made athletics impossible, even in the Special Olympics. I mourned the loss of opportunity, the isolation from such hallmarks of American life. It was only later that I realized that isolation was more ours than hers.

The wisdom of the passing years taught me that Gabriella was winning in other ways. Her perseverance helped her survive dehydration and surgeries, and multiple bouts with pneumonia and debilitating seizures. She succeeds at things that might seem insignificant to us, like reaching out to secure a nearby toy. Often she wins our attention when she decides we have ignored her for too long. And she wins the heart of everyone she meets, with her smiles and clicks.

My perspective has changed over two decades, in ways I could never have imagined. Small victories came in nights of uninterrupted sleep, in seasons without illness, in years with no hospitalizations. There were bigger triumphs to relish, like getting our school district to agree to allow Gabriella to attend Lakeview, or convincing her health insurance provider to continue her nursing.

But most of all, I’ve come to appreciate what really matters, simplicity and peace, friendship and love. Lisa feels the same way, as do our family and close friends. So while I’ll spend this evening rooting for the Patriots, whatever happens on the football field, we’ve already won.

I’m just going to put it out there. Living with a child with multiple disabilities, I don’t believe there’s a six-step grieving process, that you go through anger, denial, etc., and at the end comes acceptance.

For us, and for families like ours, things happen differently. Before I explain, a little context…

On our honeymoon, I snorkeled at the Baths of Virgin Gorda, diving and swimming around prehistoric boulders the size of small buildings. For a while I was down there alone, and I plunged along one of these great dinosaur eggs, rappelling down its smooth face toward the underside, into a scatter of blue and yellow fish. For a brief shimmer, I couldn’t right myself, scrabbling my hands against the rockface. Then I seized my calm and pushed off the boulder and let the watery force lift me to the surface. It happened so quickly, I knew little fear. Only the sensation of being too deep, too long.

I had that same feeling beginning the day Gabriella was born. Not only did we face the changes all couples confront with their first child, but we encountered new routines unique to our daughter. To secure her dislocated hips, we triple-diapered her. We learned to soak off the tiny casts that the orthopedist put on the vertical talus on one foot and her clubfoot on the other. And before she was two weeks old, her weight fell below five pounds and we rushed her to the ICU.

In the following months, cataracts appeared and she underwent four surgeries, one to extract the blight from each eye, and two more to implant intraocular lenses. The surgeon broke and reset the bones to correct the clubfoot. A bump emerged on her head and swelled, leading to a frozen section that indicated that the tumor the neurosurgeons had removed was a malignant sarcoma. And we already had a diagnosis that not only threatened our daughter with mental delays and a shortened lifespan, but loomed over future pregnancies as well.

You hear about the six stages of grief: shock, denial, anger, bargaining, depression, and finally acceptance. And we certainly did our tour of the stages. Exhausted, overwhelmed, unable to focus on anything else, we sleepwalked through those first weeks in the hospital and out.

Denial followed soon after. I became unwilling to accept what was happening, and more so that this would impact the rest of our lives, but it was and it would.

Anger consumed me, and for a while I blamed God. I didn’t understand why this had happened to us, to this tiny faultless child. And that led to bargaining.

We were depressed a lot in the early years. Despite my natural optimism, it took a while, but we got to acceptance, too. So why then do I reject the traditional notion of the six stages?

Because the grieving process has not been a onetime thing, the stages coming rapid-fire in their own sequence.

Every time we confronted something new, a fresh process started. I felt shock in the beginning, shock again when our daughter became dehydrated, shock that she had cataracts, shock at the diagnosis and again with the frozen section. While I was denying Opitz trigonocephaly, I was in shock over the cloudy spots in her eyes. While I bargained with God for a pathology report that refuted the sarcoma, I accepted the forthcoming strabismus surgery.

So when I say I don’t believe families with children with disabilities have a grieving process, I think instead that there’s a series of six-step processes, one within the other like Russian nesting dolls.

In a way, knowing that brought us wisdom and comfort. The emotions were different each time, but we knew we would make it through the emerging process as we had the prior round. But that didn’t mean we dreaded any less the pain of the one in our sights.

In the end, life with Gabriella will always be different. We accept that, even if we follow a circuitous path to get there. Again.

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.

Right around Gabriella’s first birthday, Lisa got pregnant for the second time.

We really wanted this, sure it would benefit all three of us, but the sight of that blue plus-sign on the home pregnancy test was frightening.

One day soon after, Lisa called the geneticist’s office and spoke with a genetic counselor that we had gotten to know. When she shared our good news, she heard a gasp. “I’m so sorry to hear that,” the counselor said.

Last week I wrote about our earlier trip to the geneticist, about the diagnosis and the three-part prophecy that accompanied Opitz trigonocephaly, like three curses in a fairy tale. Now we were approaching the end of the first year, staring down the threshold for Opitz babies. Suddenly we encountered a second curse, the one-in-four chance that any future child would be stricken with the same condition. When the geneticist had first explained this, I stammered that we wanted other children. What were we supposed to do? “Most parents we see in this situation just decide not to have any more children,” the geneticist said. “Or they adopt.”

We had been undeterred.

But with all we’d gone through already and the many challenges that lay ahead, the prospect was daunting. And while we remained skeptical about the Opitz diagnosis itself, we did believe Gabriella had a genetic syndrome. Remembering my high school science class, examining classmates for attached earlobes and curled tongues, I suspected that whatever they called it, her condition could yet recur in this next child.

Because of our situation, they had us in for genetic counseling, at which time they encouraged us to undergo a chorionic villus sampling. CVS consisted of removing a tissue sample from the fetus with a needle. The test would tell us whether this second child had Opitz, but Lisa discovered that its very application could cause birth defects. We declined.

At the same time, we thought back to Gabriella’s birth, to the discovery that she was different from other kids. We couldn’t face another surprise.

Then came another scare. Around the same time, we had an alpha fetoprotein test, and this came out abnormal. This meant our second child now had a higher chance of Down’s syndrome.

What were we to do now? Take the CVS and risk further harm, or risk another birth-date filled with awful surprises?

We learned about an alternative test, a more sophisticated form of ultrasound able to tell whether the baby in utero had Down’s, among other abnormalities. It could also show the presence of contractures. Often based on the length of the tendon, contractures reflect a tightness in the joint, limiting the degree to which she can bend her wrists, her knees, her ankles, and many other joints. Gabriella’s contractures were related to her arthrogryposis, another manifestation of her syndrome. No contractures would mean this little one didn’t have the same syndrome.

We got excited. They’d do the Level II Ultrasound at twenty weeks. While not definitive, this test could relieve a lot of anxiety. Worst case scenario: we’d have time to get used to the idea of another baby with multiple disabilities.

We returned at the appointed time to the geneticist’s office, which at this point was not one of my favorite places. The genetic counselor stopped us outside and asked, “Will it make a difference, the ultrasound?”

“It’ll make a big difference to us,” Lisa said. She made it clear that we would have the baby regardless.

Soon the technician squirted gel onto Lisa’s belly and wound the sensors in circles. I watched the monitor and clutched her hand. The technician pointed out the head, the arms, the legs. Soon we discovered we were having a boy, but still we held our breath.

“He’s quite active,” the radiologist said. “He’s flipped over just since we started.”

Then the geneticist entered, arms crossed. We awaited the ultimate verdict.

As a medical professional, Lisa more easily recognized the image floating on the screen, and I looked to her. Both of us watched the geneticist with a sense of panic. “See that?” the radiologist said. “That’s the baby’s hand.”

Then the geneticist spoke. “Just that alone. It couldn’t do that if it had Opitz.”

With a surge of joy, I peered at the ghostly hand on the screen, and then I saw the miracle at the end of the geneticist’s pointing finger. Our son was giving us the thumbs-up.

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.