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.

Every snowfall, every sleet-storm, every freezing rain, our driveway is a journey into the unknown, just as our life has been since we had our first experience with a genetic diagnosis.

This year marks our twentieth in our current house, located on a cul-de-sac in a quiet suburban neighborhood. There are four houses around the circle, but ours is the one where the sun never climbs more than a third of the way up the driveway. One-in-four odds, I guess. (As compared with the odds of having a child with our daughter’s condition, a microscopic number.)

In winter, the first sunny day melts the wintry mix in each of our neighbors’ yards, while we still have a slick for days. If it was just us, we would take it in stride: we’d tromp down through the snowdrifts on the lawn or take our chances on the driveway.

But it’s not just us.

Once when she was young, I scooped up some snow to place in her hands. After a brief show of dismay, she did what she does with stuffed animals and other toys handed to her: she tossed it on the floor, indifferent.

We cannot be indifferent to the snow.

To reach the bus to transport her to her day program (and before that to school), we need to get her wheelchair to the bottom of the slope. And from November on each year, we no longer know what’ll come with every passing week.

Thus far this year we’ve had eight inches of fluffy snowflakes, one inch of sleet, three inches of wet snow, etc. And if it’s anything less than four inches, I never know just how to attack it. Do I shovel it away and take the chance that the remnants freeze? Do I put something down hoping the ice will melt?

Recently, a few inches left a layer of snow that provided enough traction to ease her down the driveway, although every time we took out the car or walked to the mailbox, the snow packed down and came one step closer to ice. The first day, even though her program was operating on a delayed opening, we had to keep Gabriella home. Her nurse arrived to dress her, but when she fitted her feet with indoor booties rather than her shoes, the truth became clear and our daughter’s face crumpled.

The next day, we resolved to get her to the bus. Lisa has been doing this for years while I commuted to work, and long ago she bought cleats that fit onto the soles of her sneakers. With those, she walked her gingerly down the perimeter of the driveway, while I put on snow-boots and worked my way through the drifts. Both of us held the wheelchair steady. It took quite a while to travel the short distance to the cul-de-sac, but we made it. One afternoon last week, when Gabriella arrived home from school, I was able to gain traction for myself but labored to heave the chair up through the driveway, sliding about in the inch of snow, until her nurse pushed me like a lineman shoving a running back an extra few yards.

My first winter since retirement has been enlightening, yet another way I realize that my wife has been flying solo against the unknown all these years. We have tried many things over time, from salt that broke down the surface to a coir mat that was intended to provide traction but only slid when we tested it. (Stating the obvious, we don’t dare expose Gabriella in her chair to any solution without trying it out.) When we had our drive resurfaced a while back, we asked the contractor about installing a heating system beneath the new covering, but he dissuaded us, saying such systems didn’t really work. Sometimes we wonder whether that would have been better than nothing.

I’m a bit ashamed to admit that I have become more attuned to the problem now that I’m home most weekdays, but it’s true. There’s nothing like experience. And so we will continue to look for new solutions.

In the end, though, every winter week offers a fresh helping of the unknown. It’s been that way since we’ve moved here twenty years ago, right around the same time that our genetic diagnosis began to unravel.

I’ll have more on that next week…

On the first day of Christmas, my Peanut* gave to me

A life lesson in dignity.

* As I wrote about a few weeks ago, at home we call Gabriella the Peanutgirl, or our Peanut.

On the second day of Christmas, my Peanut gave to me

Two decades (and three) of love

And a lesson in priorities.

On the third day of Christmas, my Peanut gave to me

Three dogs at school

Two meows from Luna

And the aura of pet-therapy.

On the fourth day of Christmas, my Peanut gave to me

Four wheelchairs

Three vans with ramps

Two bath-chairs

And a life lesson in adaptability.

On the fifth day of Christmas, my Peanut gave to me

Five magical clicks;

Four gifts from strangers

Three spontaneous blessings

Two lucky breaks

And a whiff of divinity.

On the sixth day of Christmas, my Peanut gave to me

Six moms event-planning

Five grateful clicks;

Four preschools seen

Three special needs trusts

Two years with Diverse Abilities

And a lesson in advocacy.

On the seventh day of Christmas, my Peanut gave to me

Seven months a-blogging

Six stages of grief adding

Five expressive clicks;

Four communion dresses

Three sensory-friendly shows

Two thumbs-up

And a lesson in humility.

On the eighth day of Christmas, my Peanut got from me

Eight syringes a-plunging

Seven meds a-taking

Six times transferring

Five echoing clicks;

Four respiratory treatments

A three-part bedtime routine

Two rounds with the toothbrush

And a lesson in constancy.

On the ninth day of Christmas, my Peanut gave to me

Nine teachers teaching

Eight aides Halloween-parading

Seven bus drivers loading

Six proms a-weeping

Five welcoming clicks;

Four devoted nurses

Three therapists a week

Two wheelchair techs

And a lesson in camaraderie.

On the tenth day of Christmas, my Peanut gave to me

Ten beach wheelchairs rolling

Nine pools a-swimming

Eight zoo-birds a-cheeping

Seven hours driving

Six times Auto-training

Five adventurous clicks;

Forever in motion

Three trips to Disney World

Two nights on a cruise

And a lesson in accessibility.

On the eleventh day of Christmas, my Peanut gave to me

Eleven surgeries succeeding

Ten fingers crossing

Nine months’ dreams a-wilting

Eight IV bags dripping

Seven monitors beeping

Six peds nurses caring

Five resilient clicks;

Four respiratory infections

Three stays for seizures

Two lithotripsies

And a lesson in tenacity.

On the twelfth day of Christmas, my Peanut shared with me

Television video watching

Leavened with loud laughing

Tender hugs embracing

Nonstop memories flooding

Ate so that I’m bursting

Servin’ creamy icing

Sicknesses avoiding

Favored loving clicks;

Forgetting all your worries

Tree awash in presents

Too few days together

And the essence of family.

Happy Holidays!

Gabriella was up early on Saturday morning.

She announced herself with a soft moaning we call “creaking”, sounding in waves through the baby monitor we use to follow her progress during the night. Like the Christmas singing of the Whos, it started in low and then it started to grow.

I laid in bed, holding my breath, as if she could hear me upstairs. Sometimes, when it’s still dark outside, she’ll drift back to sleep, but the faint light and her persistent creaking convinced me she was beyond that. So I got up.

For the past couple years, Saturday has been my morning. That means I get her ready and give Lisa the chance to sleep in. (When I retired, Fridays became “her day”.) This week, Gabriella woke up some time before 7 a.m.

That only meant a little earlier than I had planned, but it made me think about sleep through the years. Gabriella’s sleep, and ours.

Like many newborns, she had trouble sleeping. When we put her down for the night, she would cry and complain until we lifted her from the crib, sat in the glider, and rocked her. This would go on for hours. We tried having her “cry it out”, but she always outlasted us. When she awoke after midnight, as she did often, it would take another couple hours to make her comfortable again.

I remember walking around her bedroom, rocking her and whistling the same medleys of tunes and whispering chuh-chuh-chuh, chuh-chuh-chuh, chuh-chuh-chuh. Time melted away, and I grew to hate the clock. In the darkness, in the spoiled silence, I aired my grievances with God. At last, bleary-eyed and dreading the alarm that would wake me for work in a few hours, I stumbled back to bed. Some nights, despite knowing it was there, despite stepping gingerly around it, my slippered foot would find that floorboard. You know, the one so many houses have. It wasn’t loud, but in the stillness it was enough.

And the whole thing would begin again.

Over the years, things got better. We moved to a house without a bias for sabotage. After experiencing increasing challenges in getting her upstairs, we relocated Gabriella’s bedroom to the ground floor. We swapped her princess bed – a beautiful sleigh-back model in light wood that I thought I could never bear to see go, as if losing it meant sacrificing her childhood – for the handsomest hospital bed we could find. Perhaps that’s why I’ve always cherished her bedtime routine of stories, prayers and songs.

With her downstairs, we became more inclined to let the middle-of-the-night awakenings play themselves out without our intervention, and more often they did. It also meant a more frenzied scramble when the pulse ox monitor went off and didn’t stop, signaling a seizure.

Gabriella’s routines have never been like those of other kids. Her brother Alexander used to fall asleep on car rides of an hour or more, especially at night, but we cannot remember a single moment of driving-sleep in our daughter’s 23 years. (As I mentioned before, though, she goes right out for eight straight hours on the AutoTrain on the way to Florida, while I jerk and start each time it tilts around a turn, and Lisa can’t drop off at all.)

Even stranger, unlike most kids who experience seizures, Gabriella doesn’t get drowsy. And when we give her a medicine like valium family in response, she becomes an insomniac. Many times, this means she is awake until daybreak, and with the chance of a recurrence higher as a result, one of us (most often Lisa, sometimes me and her in rotation) will spend the night on the sofa downstairs, hopping up with any persistent beeping.

For many years, I got only 5 to 6 hours of sleep per night, before rising at 4:30 a.m. to get the train into Manhattan. Perhaps the greatest blessing of my new life has been more regular rest. And I no longer mind if there are a couple interruptions. Sometimes the culprit is our cat Luna, informing me with a gentle headbutt that we had forgotten to refill her bowl. So I creep downstairs, and after replenishing her food I peek in on Gabriella.

Most times I find her sleeping with a smile soft on her lips.

This week is Gabriella’s birthday, and family came together to celebrate this past Saturday. As we do every year, we hosted another day of food and togetherness Thanksgiving weekend.

As I’ve posted about before, the day of our daughter’s birth came at us with an avalanche of shock and change. Then the geneticist diagnosed her with Opitz trigonocephaly, which portended among other ills that Gabriella wouldn’t live a year. Reaching that milestone brought joy and relief, and every birthday after reinforced our feeling of being blessed.

As is tradition in Lisa’s family, we threw her a big first birthday party, catered in a hall with over one hundred guests and a DJ. After that, we absorbed Gabriella into the normal annual cycle.

During her eighteen years at Lakeview School, Lisa would send in cupcakes to commemorate her day. While our daughter has always eaten a pureed diet, they mashed the cake and especially the icing in milk, and Gabriella loved it. At home, we have a birthday cake and light a candle and sing Happy Birthday, softly because loud noises frighten her. Then one of us blows it out and she digs in.

For years I was unsure whether she knew the singing was for her, but now I am certain she does. She became so excited this weekend that she threw out her arm, landing it in the cake, coming away with her fingers full of whipped cream, and upending the candle and snuffing it against the tablecloth, all without burning anything.

Otherwise, Gabriella’s birthday party is not much different from a typical Sunday. We bring her to the table for as long as she can stand it (often a matter of minutes), and we put on a video or lay her down with music. The food is always delicious, and Lisa purees some for her, but I struggle that she is on the periphery at her own celebration.

We’ve tried other things. One year, we had a special party for her, including a musician who sang children’s songs, but she soon became bored and the lady performed more for the other kids. Most of all, we try to shower her with attention, which makes her happiest.

She is never short on attention – she would have it no other way – but we try extra hard to dote on her this time of year. When she’s cranky, we’re a little quicker to her side, and there are more of us to do so. (These past five years, since we started nursing coverage, she has an attendant throughout the day, and she can be overwhelmed with everyone wanting to help.)

Buying her presents can also be tricky, even for us. She grew out of stuffed animals (except for a few that accompany her to bed each night) long before she stopped receiving them as gifts. She has just a handful of favorite toys. Most practical items can’t wait for a birthday or Christmas. As a result, most of what she receives are clothes, many beautiful outfits and accessories we truly appreciate.

Over time, I’ve concluded that Gabriella’s birthday, like most things, is about us as much as her. I experience relief each year that we have surmounted the early years and come through it as a family. I appreciate all she does for me a little bit more. I know pleasure at her joy when she realizes Happy Birthday is in her honor and she clicks in delight and more so when she hears her name.

Even before she was born, I decided I wanted a nickname for our daughter. Gabriella seemed such a grandiose name for a blip on an ultrasound, and neither Lisa nor I were crazy about the usual nicknames, Gabby or the Italian Lella. (At Lakeview they called her Gabby, but we’ve never adopted it at home.) I tried out several, Pumpkin and Peanut and others. After the trauma of her birth, I found I needed something unique.

She became the Peanutgirl. I created my own lyrics for songs (for example, the Beach Boys’ Little Surfer Girl turned into Little Peanutgirl), even though I don’t sing for anyone but her. Twenty-three years later, that’s still how we refer to her.

So Happy Birthday, Peanutgirl!