Why her?

That question bubbled up right from the day of her extraordinary birth. Why did this happen to our daughter? Why her?

We’re not smokers, and we drink infrequently. Lisa knew she was pregnant from early on, and over the nine months she followed every rule. She didn’t take a single Tylenol. But from the moment the doctors removed her via C-section, her physical challenges were obvious. A club foot and a vertical talus. Two dislocated hips. Severe contractures of her joints. And so we asked.

Why her?

Sometimes the question reeked of self-pity. ‘Why her?’ translated to ‘Why us?’

Part of the allure of getting a genetic diagnosis was an explanation for what had happened. Syndromes have different causes, and some are anomalies. When the geneticist told us our daughter had Opitz trigonocephaly, we became consumed with the complications and the implications. As in a fairy tale, the diagnosis brought three consequences: she would have profound mental delays, she wouldn’t live to be a year old, and there was a one-in-four chance that the condition would recur in any future pregnancy.

But the diagnosis proved wrong and the geneticist recanted. And so the question rose up again in the shadows of our lives. Why, then? Why had this happened to her?

I went through a difficult period in my relationship with God, and this question weighed at its core. My faith suffered. It felt personal, as if our family had been singled out. Again I wondered why. We had always tried to be good Catholics. So why her?

People offered support, saying ‘God only gave you this burden because He knew you could handle it.’ (They didn’t realize that this seemed more like a punishment for our faith and fortitude, but we saw that they meant well.)

It took a pilgrimage to Lourdes to make my peace with God. I stopped seeing God as a thunderbolt-hurling deity and instead sought mercy.

After that, my blame was more aimless. If it wasn’t God, and it wasn’t us, was it fate? Was it just meant to be? But when bad things happen, fate is an unsatisfying explanation. It seems like another way of saying we have no idea.

Somewhere along the way, my perspective changed again. There wasn’t a moment of epiphany. Perhaps my sense of acceptance broadened. Whatever the cause, I stopped asking ‘Why her?’ Instead I thought ‘Why not her?’

I like to believe this might stem from the humbling we had experienced in our lives. Once I thought others more likely than us to have brought such a situation upon themselves by engaging in dangerous activities while pregnant. But did we deserve it less?

Then I realized that the whole notion of ‘Why her?’ is based on the assumption that what happened to Gabriella is unfortunate. But when I considered ‘Why not her?’ I also recognized that her situation, her life, is not a curse, but a blessing.

And for me, being Gabriella’s dad was an opportunity. I credit our life together with making me a better person, if only because I became more sensitive to the needs of those different from me. With making me a better leader, because she taught me to prioritize and to achieve balance. With making me a better writer, because she gave me rich material and helped me find emotional honesty. And, counter to my expectations, with making me more optimistic. Enough so that sometimes, on my best days, I ask ‘Why her?’ in a whole new way. As in, how did we get so lucky?

As more of us do than would care to admit, I look to my faith in God more when my needs are greater, and they had never been greater than they became when we found ourselves responsible for our fragile little daughter.

Like a glass ball balanced on my head, I lived in constant fear those first few years that she would fall and shatter. So I prayed to God. Or rather, I beseeched.

As a child, I considered God an unknowable abstraction. My faith was a collection of rituals, the scapular from my First Communion, the rosary beads, the incense dispensed through the congregation and the edges of the cross on my throat on the Feast of St. Blaise. When Gabriella came, He became all-powerful, able to bestow a much-wanted baby but no less able to make her sick.

And so, just as much as I counted on Him to spare us, I also accused God of creating this situation in the first place. I recognized my blasphemy, but I was weak.

Before Gabriella was born, Lisa and I prayed the Fatima devotion over five months. On the first Saturday of each month, we attended early morning mass at the church or the convent, among a congregation of a dozen. We offered rosaries and went to confession. We had no idea what was in store for us, but thought it couldn’t hurt.

For a while after our daughter’s birth, I wondered what the point had been. I felt a twinge because I’d forgotten the rosary on one of those Saturdays, fearing that I had ruined the whole thing, but I was unable to believe in an unforgiving Old Testament God. I concluded our Fatima ritual had been a waste of time.

Later, Catholic guilt or fear surfaced another possibility. What if the Fatima devotion had helped Gabriella to survive her dehydration or other crisis of those early years? Piety was easier when things were going your way.

Several well-meaning souls offered us a compliment, saying that God only gives children like Gabriella to parents capable of handling the challenge. I would bow my head and thank them for their faith in our abilities, but in the wee hours, when my despair was the darkest, I would wish we were less capable.

Many nights I felt as if locked in a dungeon. Our daughter lay awake, complaining and impervious to sleep, while Lisa and I took shifts for ninety minutes or two hours at a clip. As the clock ticked toward the end, I remember the relief (I didn’t see it as selfish at the time) as I staggered down the hall and tagged my wife “it”.

Patience has never been one of my virtues, and it was a relief to make it through my shift without losing my temper. Other nights were worse. Anger would swoop over me and I would stomp around her bedroom, taking in the closet doors I painted, the crib we purchased, the bumper and pillow we received from loved ones, all to ready her room for her. Unfortunately, I was less ready.

My bitterness was never aimed at her. She was wholly innocent.

I didn’t blame Lisa or myself either. From the earliest diagnosis, none of the explanations for Gabriella’s condition suggested we were responsible. That was a huge blessing.

I wasn’t raised to believe in fate. So I blamed God.

I begged to know why so many children were born to uncaring or abusive parents, abandoned or even killed. Why, I pleaded, had this happened to our child?

In those moments, I had no use for the logic that God gave us the challenge because we could handle it. In the middle of the night, every whinge, every gasp, every surge of vomit would send me into despair. More than once, I pulled off my golden crucifix (never hard enough to break it, mind you), gripping it as if to crush it in my fist, tossing it aside, even hating or cursing God. I knew we were lucky to have Gabriella, and I hoped that she was fortunate to have us, too. There was no doubt she needed us. Almost at once I would feel remorse, crawling after the discarded chain, my hands pawing the rug, until I found it and slipped it back around my neck with a tiny prayer of apology, certain that it was too late, that I had assured myself of eternal damnation.

And that led me to another conclusion, flickering in a grim corner of my mind. Maybe Gabriella was my shot at redemption, even heaven. I questioned whether I’d had much chance before, based mostly on the sin of apathy.

I’ve always been an optimist, but the early travails and the diagnosis sapped me of my positivity. What if my overreactions in the dark had cost me my opportunity before I even recognized it? I rejected that prognosis, accepting that God was forgiving. If only I could forgive myself.

I seized this new chance, finding something to get me through the bleakest nights. Like an alcoholic in recovery, sometimes I slipped, but I had found a flicker of faith. It had been with us all along, in the innocence of our daughter.

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.

At the beginning, we thought a genetic diagnosis would help us conquer the mystery and achieve our quest like the hero and heroine in a fairy tale.

There’s something comforting about having a name, even though I, at least, found all these medical words to be a foreign language. We knew a diagnosis wouldn’t solve our daughter’s problems, or our own, but we hoped it might help us focus in the right place. One syndrome had a higher rate of heart disease, another a tendency towards epilepsy.

So like the young princess in the fairy tale of Rumpelstiltskin, we went in pursuit of a name that would win us back our daughter.

I’ve written before about our initial experience with a genetic diagnosis. We had crept into the geneticist’s office and secured our prize, Opitz trigonocephaly (or Opitz C), but it was like a curse with three awful conditions. First, Gabriella would be severely mentally delayed. Second, she would not live to be a year old. And third, there was a one-in-four chance that this would repeat in future pregnancies.

We set about trying to weaken the curse by defeating each of its conditions. When Gabriella turned one and then two, we claimed a first triumph. When her brother Alexander was born healthy, we gained a second, although we decided not to tempt fate with further children. These successes brought relief, but we couldn’t escape that final condition, and as time passed our daughter’s cognitive delays became more pronounced.

We accepted our fate, even though we continued to doubt the diagnosis.

When Gabriella was two, her geneticist called us, sharing reasons to question the diagnosis. We later learned that the doctor who discovered the syndrome had deferred his own conclusion when consulted. He had cited inconsistencies with the pattern, and most notably our daughter’s cataracts. In fact, no patient with Opitz C had ever had cataracts.

This lingering question created its own anxieties, and we decided to take another run at genetics. I was still angry and uncertain about our prior experience, but in August 1998, we traveled to a premier children’s hospital to see a renowned geneticist.

I remember my dilemma entering those pristine halls, as if coming before a seer with a crystal ball. While I would be happy to hear the last of Opitz C, a new syndrome would likely carry its own curse, its own conditions. We had long before concluded we would treat Gabriella’s symptoms as they arose, even though that sense of the unknown and the sudden emergence of both the cataracts and the tumor on her skull had created unending dread those first few years.

The renowned geneticist had her team conduct a thorough physical exam. They took a detailed medical history. The genetic counselors asked about our parents and grandparents, about miscarriages and disabilities in prior generations. They ordered a high-resolution chromosome analysis. And in the end, they concurred that the findings were inconsistent with Opitz trigonocephaly.

That curse was lifted. But what was it?

We returned to the realm of Rumpelstiltskin. My sigh of relief was shallow as the renowned geneticist introduced other syndromes like Walker-Warburg and Miller Dieker. These names meant nothing to us, any more than Opitz once had. They were intimidating all the same. But they soon ruled out Walker-Warburg. They recommended testing on chromosome 17, which came back normal, and as a result they eliminated Miller Dieker. Finally, they suggested sending blood samples to researchers at the Children’s Hospital of Chicago. We acquiesced.

We returned home relieved, but still fearing the unknown. The frenetic pace of those early surgeries and hospitalizations eased, bringing encouragement.

Twenty months passed. We almost forgot about the researchers in Chicago. At last, in early 2000, the report came back. Based on her blood and her DNA, Gabriella didn’t conform with any known syndrome.

Our standard answer when asked for her diagnosis became “an undiagnosed genetic syndrome”. It sounded empty, like the null set in math, as if I had reached the end of a long and absorbing novel that just stopped without resolution.

The British call this a Syndrome Without A Name. I embraced this, and its charming acronym. In one last fairy tale moment, our daughter’s ugly duckling situation had turned her into a beautiful SWAN.

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.