Lisa and I were blessed with amazing dads. This Father’s Day, I’d like to share some things we learned from Paul Van Heest, Sr. and Anthony Lobaito that influenced our life together.

1. Put Family First – Both directed their big hearts at their families, and from the beginning both were enchanted with Gabriella. We remember Lisa’s father crawling on the floor to get alongside her, even though his knees punished him when he got up. My dad took lots of video with the camcorder he hefted on his shoulder. Both tried to treat her no differently than their other grandchildren, but each recognized her for the special person she was. Although her emerging condition was a lot for them to comprehend, they always showed empathy and encouraged us, her parents, despite their own anguish.

When we were kids, it was important to our fathers to spend time with us, playing, joking, sharing lessons. They were capable of great sacrifices for their families. Lisa’s dad worked two jobs for much of his adult life. And when my brother got engaged to a young lady from Kirghizstan, Dad taught himself Russian to help her feel more welcome when she arrived in the United States. Both formed superb teams with our moms, modeling the marriage we aspired to – unified, supportive, loving – and which became a foundation for the partnership we’ve depended on when faced with our own challenges.

2. Make Character a Priority – Lisa’s father had a keen sense of direction, but we used to joke that my dad could get lost pulling out of the driveway. Both men, however, had excellent moral compasses. Many times, I’ve asked myself what my father would have thought or done, in making my own decisions, and it’s always served me well.

Both fathers were well-intentioned and respected those they met as if they were, too. When things go wrong, it’s natural to blame others, but I try to apply their lesson and assume people are acting with the right motivations. When I was younger, I had grand ambitions, not least for the books I would write. The humility I saw in both men led me to accept when life events shifted my priorities and deferred my dreams of authorship.

Lisa’s dad was sensitive and cried easily. As readers of this blog know well, I allow my emotions to show much more in the past twenty-three than I did before Gabriella was born, and I got more comfortable doing so in watching him.

3. Make the Most of Life (including Retirement) – We visited both of our dads this weekend at the mausoleum ten minutes from our house. Both died in their seventies, far too young. Some lessons come only in retrospect.

My father retired at 55, with a long list of things he wanted to do with his new freedom. He and Mom did a great deal of traveling that first decade, but he finished most of the others within a shorter time than he expected. In his late sixties, he developed Alzheimer’s, which plagued him for seven years before he passed away. Lisa’s dad suffered a mugging in New York City that stunted and ultimately cut short his working years, and he too spent his later life with less to do than he would have liked.

As I’ve transitioned into my own early retirement, I recognize the need to ‘retire to’ something. Writing and blogging allow me to pursue a lifelong dream, and together with teaming with Lisa to care for Gabriella, offer richness and fulfillment.

4. Think Well Ahead – My father was an accomplished planner. One of our close friends always called him his hero for the way he prepared his financial future. His ability to retire young from a middle-class job resulted from decades of planning, investing as much as he could for his retirement and spending the time to ensure Mom would be provided of. His long-term care insurance helped when his Alzheimer’s worsened, while still protecting her interests.

With Gabriella, planning has always been a focus for us. When she turned 18, she became a legal adult and we had to apply for guardianship. It was critical to understand the nuances for qualifying for SSI and Medicaid, and we established a special needs trust.

Even though they’re gone, our dads left a lifetime of memories and a legacy of lessons on how to excel as a father. Today on Father’s Day, I honor them.

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.

Time. It’s our most precious resource.

For everyone, finding time is challenging. There are untold classes and articles about how to optimize time, but many acknowledge that during extraordinary periods in life, it’s necessary to focus all one’s energy and everything else will have to wait. One of those periods for parents is the birth of a baby; the good news is that the time of greatest demand is limited.

For a caregiver of a child with special needs, though, many of the demands associated with a newborn never go away.

This is a truth I accepted years ago. But it makes me think a lot about time, and about different ways we and other caregivers have to make time to keep ourselves sane.

One of my recent New Year’s Resolutions this year was to make time for family and friends. When I wrote that, I was casting a broad net. Here I want to focus on the need to make time for our immediate family.

1. Make time for ourselves. During the many years I commuted to New York City, I found different ways to maximize my “in between” time. One example was my writing. I’ve been crafting fiction for most of my life, and earlier in my career I wrote for an hour at home before I left for work. When I changed employers twenty years ago, then moved a little further out, it became untenable to rise any earlier. At the same time, our new life with Gabriella limited my time at home. I feared I would lose my dream of authorship. When Lisa encouraged me to try writing on my trip in, I was reluctant. I wrote in silence, and the crowded train was too distracting. As usual, she was right and I spent my morning commute over the next twenty years on my fiction.

For Lisa, it’s often been harder to find daily alone-time, although she’s a night owl and enjoys the peace in the house after the rest of us have gone to sleep. Sometimes grander events are the answer, and this past weekend marked her eighth annual New York City getaway, a chance for her to recharge and focus on one of her hobbies.

2. Make time for us as a couple. For many years, we were unable to have a “date night”. Gabriella’s complex medical needs (including transferring her from her wheelchair to her bed) made it difficult to get out even for an afternoon meal. We made do. We got to know all the takeout places in the area, watched movies at home, and did without other forms of entertainment we had once enjoyed. But we were in the house, which meant Gabriella was always a short distance away, and we were always on duty. In addition to stress, this created a sense of isolation.

Then one of her teachers offered to babysit for us. She was used to lifting and changing her, and could transport her upstairs and into bed. We were thrilled. For a while, we got out once a month because of her kindness. And when she was no longer available, a second teacher volunteered to take her place, continuing to allow our date nights for several years. Now that we have capable nurses helping with Gabriella’s care, we have been able to step out a bit more often. It’s still extremely rare to go away overnight, but we have taken advantage of our time together to refresh ourselves as a couple.

3. Make time for her sibling. Since Gabriella’s brother Alexander was born, and perhaps even back to when he gave us the thumbs-up on the Level II Ultrasound, we’ve recognized the need to give him his own time. It was easy to devote all our attention to his sister because she needed so much, and that brought guilt. As a child, he exhibited only occasional jealousy, and he showed signs of being an introvert just like his parents, enjoying solitary activities.

Especially when he was young, however, we sought ways to make him feel special, too. We made sure one of us was there for soccer games or piano lessons, and we also tried to find unique activities to do with him, independent of his sister. When we had Nonni with us in Wildwood, for example, we would leave Gabriella with her and take him for “three spoon ice cream”, an oversized sundae for us to share. We’re proud of his independence now that he’s grown up, but we still look for things we can do with him alone.

4. Make time for our daughter herself. This one sounds counterintuitive, but so much of our life with Gabriella is spent on the tasks of daily living (dressing her, feeding her, giving her medicines). It’s tiring, and often overwhelming. But we seek out special pleasures for her as well. I’ve written about some of our big activities in the past, such as sensory-friendly shows and trips to the zoo or even Disney World, but these are the grand gestures and occur only a few times each year. So we try to enjoy the smaller things.

When we’re home, it’s easy to get sucked into the daily routine. Because Gabriella is a music-lover, it can be as simple as listening with her to salsa music (a favorite of hers).

If we’re successful, in each of these ways, we can make time beautiful for one another.

We had a wonderful Christmas season this year; I hope you did, too. Like many, I confess that I overindulged, and I find myself thinking today about New Year’s resolutions.

My resolutions fit into four categories. In each case, they derive from something I learned or reconsidered over the past two weeks.

Take Care Before Giving Care: Being a full-time caregiver is exhausting. Based both on our own plans and nursing availability, we were on our own with Gabriella more often during the holiday season. This outcome offers pleasure with every appreciative smile, but it takes its toll on us physically. Lifting her and repositioning her in the chair and on the bed results in aches in our backs, but also on our wrists and hands.

With the return to our normal schedule, it’s important to care for ourselves. For me, this means not only setting aside those delicious Christmas cookies and returning to neglected exercise routines, but also looking for little ways to help my amazing partner on this lifelong adventure, my wife Lisa. For us, this is the ultimate team sport.

Make Time for Loved Ones: One of the great things about the holidays is the chance to spend time with family. My brothers are spread across the eastern United States, and last year, like most years, it was the only time we had to be together. We also got several opportunities to see good friends.

My new writing-and-blogging schedule enables me to fulfill a lifelong dream, and as an introvert I often enjoy my seclusion. But I will make more effort as well to share time with loved ones.

Show Gratitude: The six weeks between Thanksgiving and New Year’s offer an ideal opportunity to express appreciation. Lisa always recognizes the people who contribute to our daughter’s care, from her nurses to her instructors at her program to her bus driver, among many others. Gift-giving is a two-way expression of gratitude.

At the same time, I want to make sure I don’t wait 46 weeks to say Thank You. My nephew Daniel has a unique philosophy: rather than waiting for birthdays or Christmas to give a gift, he buys one whenever he finds something he thinks someone will love, and he gives it right away. He is as excited as the recipient at the prospect of presenting his find, and the gifts themselves are always thoughtful. This year, I’ll strive to adapt Daniel’s philosophy to expressing my gratitude.

Seek Out the Wondrous: The Oxford English Dictionary defines “wonder” as a feeling of surprise mingled with admiration, caused by something beautiful, unexpected, unfamiliar or inexplicable. I have been fortunate to find this emotion in many places, from stories to nature to my relationships with family and friends. Often I discover wonder in our life with Gabriella.

Last year I wrote about attending a sensory-friendly performance of Mary Poppins at the Papermill Playhouse. Over the holidays, ten members of the Van Heest family returned to Papermill to see Annie, again in a sensory-friendly environment. We all enjoyed the show, but more so we found a sense of wonder in Gabriella’s joy. She had never seen even a video recording and was unfamiliar with the music, but she clicked and made whoopee-noises throughout. In 2018, I will seek wonder anew, for myself and for our daughter.

Time will tell how well I stick to my New Year’s resolutions, but here on January 1^st, I am filled with optimism.

What are your New Year’s resolutions?