What if? Isn’t that the question many of us ask throughout lives? What if I had gone the other way at the fork? What if I had been luckier or reacted differently? What if events hadn’t turned out as they had?

Isn’t ‘what if’ a dangerous question? And yet, haven’t I asked it many times in twenty-three years?

What if Gabriella was born normal?

What if her disability was less severe? What if she needed fewer surgeries? Fewer hospitalizations? What if she didn’t have gastric reflux that brings her nausea and vomiting? Or epilepsy, causing seizures and requiring a mix of medicines that risk indecipherable side-effects?

But haven’t we sat in the ICU, noticing parents of kids on ventilators or dialysis machines, thankful that our daughter’s plight is not worse? Don’t we know others who suffer from drop seizures that threaten physical harm every time, or need more intense equipment? Why would I tempt fate?

What about narrowing my inquiry?

What if our daughter could speak in words? If she could tell us it’s her head that hurts, or her stomach? What is she aching to say? Then again, what could she express more beautifully than with a click or a whoo-ee?

What if she could walk? Would she love to run a marathon or dance the tarantella or climb a mountain? Would any of those experiences bring her more joy than riding the dunes in her beach wheelchair?

What if ‘what if’ is a selfish question? Would Gabriella want to be different than she is, or is this really about me and us (her parents and family and friends)? Is my real plea that we be spared all the hand-wringing, the backaches, the monotonous routines day after day, week after week, year after year?

And what about all we’ve learned from her? What if she hadn’t taught us to love more deeply than we ever knew? To devote ourselves to another person and to become attuned for another’s needs? What if she hadn’t shaped the way her brother sees the world?

What if she hadn’t helped me put life into perspective? What if my priorities were not based on a life shaped around her? Would I have been a different person, with other values, focused on things that seem less important to me now? If not for her, what would I write about?

What about all the great friends we’ve made, the colleagues the company I chose for the work-life balance it offered in the 1990s, the neighbors in the town we moved to for its reputation for working with families like ours, the community at the school we fought to get our daughter into?

How would my soul replace the blessings it’s gotten from a child’s unexpected gift or an adult’s act of kindness? From the wonders religious and spiritual, planned and unplanned?

What, indeed, if Gabriella was born normal?

And what is ‘normal’? Don’t so many children face challenges, from anxiety to food allergies to learning disabilities? Would I prefer she had one of those? What about the kids stricken with cancer and other life-threatening illnesses?

Am I simply wishing my child was perfect? Or am I just not acknowledging that she already is?

 In a prior post, I offered five ways that caring for a special needs child made me a better leader while at a mission-based organization. Then I suggested five more. Now that I’ve transitioned to my second career, I realize that our experiences, and Gabriella’s unique attributes, have also made me a better writer.

Finding Emotional Honesty

Life with Gabriella has instilled in me a courage I never knew I possessed. Watching her fight through seizures and surgeries has given me perspective in facing my own battles, even while I recognize I have encountered little as menacing.

Telling a story, in itself, doesn’t take a lot of courage. When drafting fiction, I have at times established a safe distance between my feelings and what I’m putting on the page. Since starting Things My Daughter Taught Me, however, I’ve tried to find the emotional truth beneath the stories I tell. Gabriella deserves as honest a representation as I can offer, and when Lisa and I review each week’s post, my wife often urges me to dig little deep to uncover the underlying emotions. I now look to reveal emotion in my fiction, too, which I believe has improved my writing.

Writing Dialogue without Words

Gabriella is not always patient, but much of her frustration stems from her inability to express herself as we would. Instead, she uses clicks and sounds, and facial expressions and body language, to help us figure out her needs. Sometimes I mimic her utterances; at other times, I speak to her in English. Either way, we find ways to communicate with each other, even if we don’t understand every single expression.

Some of the best feedback I’ve gotten on my fiction focused on reworking my dialogue. I have a tendency to have characters speak “on the nose”. In other words, they say exactly what they mean. Good dialogue, however, relies on subtext, the language beneath the language. To strengthen this nuance, I take cues from my communications with my daughter. Examples include the annoyance at not quite understanding, or talking past one another, or trying to guess subliminal meanings by reading faces or gestures.

Embracing the Mystery of Life

Gabriella’s diagnosis was heartbreaking, not only threatening to shorten her life but also hanging over future pregnancies. We sought an answer because we hoped that knowing its name would help us like Rumpelstiltskin’s name in the fairy tale, but Opitz C was so dire we felt little solace. The discovery later that the geneticist was wrong brought relief. But the sense of mystery remained, and we continued to face questions such as we had never known. Why had this happened to her? Why had it happened to us? They were enigmas without easy solutions, and they’re common to many parents of children with disabilities. I struggled with these quandaries for years, and perhaps I still do, even as I’ve accepted that for our family, at least, there are likely no answers at all.

Mystery flows through writing, too. Not just Agatha Christie cozies or Raymond Chandler hard-boiled noirs, but all well-told stories contain mysteries, as the reader seeks to understand what will happen next and why. Puzzling through the questions above reminded me that mystery can also be less about the characters or plot, but rather about fundamental truths. Where I had once shied away from such riddles, I embrace them now when creating fiction, and have woven them into the plotline itself. As a result, I hope to achieve greater resonance by sharing another dimension of my personal story. I doubt I would have had the instinct or the guts to do so before Gabriella.

Finding Inspiration in Unexpected Places

From the day Gabriella was born, it was clear she would face physical challenges, but we held out hope that her mind would be spared. I envisioned a lovely young lady in a wheelchair, blessed with a compensating intellect. But alas, it was not to be so. One of the three parts of the curse of Opitz C was the prediction that our daughter would be “profoundly” delayed. Unlike other implications of her genetic assessment, this proved true. In the shock that followed this revelation, I knew many disappointments, some more selfish than others. One was the realization that my child would never read a word I wrote.

But while she may sense it only through instinct, Gabriella inspires my writing in her own way. The most obvious example is this blog, through which I celebrate her victories and her life. But as I noted in above, I also build in storylines that allow me to tell her story – and that of our family – in other ways.

It’s just one more way being her dad has made me a better writer.

This week, I’m pleased to share a guest post by Gabriella’s brother Alexander. I think you’ll enjoy it.

I’ve always been proud to be Gabriella’s brother. I’ve gotten to see life in a different way than most people, and all of these experiences have made me a better person. However, it’s always been a little hard for me to talk with people about Gabriella because of the different reactions that I’ve gotten to telling people about her multiple special needs. A few people, especially when I was much younger, would have had lots of questions that I usually didn’t know the answers to. More often, people have a concerned look on their faces and nod solemnly or say, “I’m sorry.” And still other times, people have no reaction at all when I mention that Gabriella has special needs.

Having a sister with multiple special needs has also made me very aware of the dreaded “R” word. While it’s always been a sore spot for me, a term that seems to be among the English language’s ugliest words, I’ve heard it many more times than I would expect from people I’ve met. Whether in passing, as a joke, or even to describe someone with actual special needs, I’ve always grown a bit cold towards people who use the word, especially when they know about my sister and still say it.

Growing up, the perceptions of others were an obsession of mine. I have vivid memories of walking down the boardwalk on vacation and simmering with anger as entire families craned their necks to stare at my sister. (I had to laugh when I read my dad’s post where he mentioned my asking the question, “Why do people have to stare?” I really gave my dad a hard question there, didn’t I?) In these situations, I always preferred when people came up and said hello to Gabriella politely rather than singling her out and making us all uncomfortable.

There were trying moments of childhood like these that made me feel lost and confused, but these events have always been overshadowed by the positives of life in our unique family. For example, my sister has helped me strive to be as considerate of a person as possible.

Whether battling through surgeries or brandishing clicks and a smile in the most needed moments of frustration or stress, Gabriella has always been there for me when I’ve needed her. Sure, she can be cranky at times, but I’ve always found that in those most crucial emotional moments, she has read the room, sensed the anxiety, and let out booming sounds of joy. No one else I know would attempt to do such a thing in a quiet and tense situation, but she has always been able to tell when her happiness and words are most needed.

I’ve also learned about compassion from living with my sister. Over the years of feeling in the dark about how my sister is really feeling at a given moment, I’ve tried many times to put myself in her shoes and imagine life from her perspective. Every time I do this, I walk away with an even greater respect for all that she has overcome. It’s impossible for me to understand all of the things she has gone through and how she feels at any given moment, but I’ve learned how important of an exercise it is to try deeply to understand how other people feel and to imagine the world from their perspective, even when it seems hard to do. In my life so far, this has been among the most useful skills I’ve learned, and I owe this one to my sister.

But beyond lessons, life with Gabriella has always been my life. When I was very young, I wished that Gabriella could run around and play with me. Then I wished I could understand everything she said, and I wished she could understand me. Sometimes I wished that our family could do things all together just like other families.

But as I’ve grown up, I’ve remembered how Gabriella and I played together and how we’ve communicated in our own language, and I’ve realized just how much she understands me and I understand her after so much time together. I look forward to saying hi to her when I get home and seeing a big smile appear on her face, and we often sit together with my parents at dinner time and talk altogether. And now, I’m confident that I would never trade what we have as a family for what some would call a “normal” family life.

Even at four, Gabriella hadn’t outgrown her baby carrier. She grew in sporadic bursts, but like most things, her weight remained behind the norm. So did her length, a word that bothered me because she was at an age where parents described their children as forty inches tall. But because she was unable to stand, they measured her lying down and reported her height in length.

Not long after starting at Lakeview School, Lisa brought her to their well-respected wheelchair clinic. This, too, was a reality I had come to gradually. Because our daughter had an angelic face, it wasn’t always obvious in public that she was too old to be sitting in a stroller, at least until she contorted and whined. We absorbed that we would need to move to something more grown up, but the idea of our child in a wheelchair seemed so final.

The director of the wheelchair clinic did a thorough evaluation and confirmed our fears. Gabriella couldn’t sit independently and she lacked the necessary support. As a result, she wasn’t eating well and her posture was worsening. She needed a platform that made it easier for her to swallow and improved her digestion.

They introduced us to the Panda mobility buggy. I had never imagined such a thing existed, a whole system of devices. While out and at school, her buggy would sit on a wheeled base. The buggy and base were detachable, allowing me to stow both pieces in the trunk of our Camry when we took her out. The Panda came with a separate component to snap the buggy into at home. Lakeview’s recommendation also included a solid seat and back customized to fit Gabriella, and a variety of other parts, including supports for her torso and legs and feet. There was even a sun visor because her eyes were photosensitive following her cataract and strabismus surgeries.

My sorrow at the thought of my child forever in a wheelchair turned to hope. This system would help her eat better and would correct her worsening posture. Months of work culminated when Gabriella’s pediatrician wrote the prescription and we submitted to the insurance company.

It took them only two weeks to mail us their denial “because custom chairs and equipment are not a covered benefit”. We were disillusioned.

This equipment had piqued my optimism. If necessary, I told Lisa, we would pay for it ourselves, even though it cost more than $5,000. I was prepared to cut corners to give her the solution she needed.

Then we heard that many insurance companies deny expensive equipment in every case. They knew some families would pony up the cost themselves, while others would give up. Not long before, I had moved to work for an organization well known for ethical behavior. In comparison, this unfeeling approach seemed wrong.

We decided to dispute the rejection.

As always, we were thorough in our appeal. And as usual, Lisa did most of the work. Over time, we encountered these rejections for everything we sought for our daughter’s care, but this was a new experience. We rebuilt a case we thought we had detailed in our original submission.

And then we waited.

In mid-December, six months after their denial, we received a response from our insurance company. The letter started by telling us they upheld their rejection of the sun visor and the basket, calling them convenience items, and not covered benefits. I never knew why they felt the need to make this point first – perhaps to save face? They went on to say they had reversed their decision and authorized coverage for the Panda mobility chair, home underframe, shoe holders, seat insert with lateral trunk supports, tray, headrest, anterior chest support and the labor to install.

It was an early Christmas present from an unlikely Scrooge.

Soon after the New Year, Gabriella was getting around in her purple Panda. She ate better. Her posture still wasn’t great, but she gained reinforced support.

And we learned a valuable lesson that would benefit us in the years to come, and that we would pass on to others: when the insurance company denies your submission, No doesn’t always mean No.

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…