Introduction to "Bedtime Stories for the Living"

Introduction to “Bedtime Stories for the Living”

This week offered a new experience. Chase came home with one of those welcome-back-to-school-getting-to-know-you questionnaires from his teacher.

One questions was, “What is your father’s occupation?”

He wrote, “Home dad.”

Cindy laughed so hard she almost fell off her chair. Haley and Dylan howled.

“What is a home dad?” I asked.

“You know, a dad who stays home and does nothing all day.”

“Seriously? You think I do nothing all day?”

“I mean you take Maggie for walks.”

Now, he’s not wrong. I do take Maggie May on 2 to 3 walks and a good portion of my day is watching her zoom from front door to back door, from window to window, barking to High Doggie Heaven as the neighborhood squirrels perform a frantic and furry version of Cirque du Soleil in the yard.

I explain to my family that I’m a writer. And that if they ever receive the “father’s occupation” question again, they should proudly respond, “writer.” Now, the kids had known about this blog and they made passing comments about my upcoming book, like “I hope your book has pictures in it.” But on this night, they took an active interest in my work.

They buried their eyes on their iPads, surfed to writeonfighton.org, and began reading. After a few minutes, Dylan asked, “Dad, are you like famous?”

Chase announced, “Hey look, it’s a picture of me.”

Haley looked up, somewhat unimpressed, “So what’s your book about?”

My daughter is not the first person to ask this question. Yes, my book is a story about my kids, my brain disease, and my struggle to accept my mortality, but the book’s inception began with me asking, “In what ways have I failed my kids?”

And with that, Bedtime Stories for the Living was born.

I want to share with you BSFL’s introduction. So you (and my kids) will know what my book is about. And so my kids know that “home dad” does more than watch Maggie May get all hot and bothered by high-flying squirrels.

I hope you enjoy!

Be well,

Jay

INTRODUCTION to Bedtime Stories for the Living

There is something you should know: In the history of my ordinary suburban life, I have never told any of my three children a bedtime story. Not telling your child a bedtime story seems like a major “dad” offense. Like forgetting them at Target or wearing a clown costume to “Back-to-School” night or letting them swim twenty-six minutes after lunch.

Do I love my children?

On most days I do.

On most days, like you, they’re decent people. So why didn’t I tell them bedtime stories?

Selfishly, I don’t like the pressure. The nightlight. The slow swirl of the ceiling fan blades. Their big eyes staring up at me, expecting me to entertain them, to stir their imagination. Who do they think I am? Bruce Springsteen? No. I’m a dad who gets his sushi from a supermarket. I wear sneakers with khaki pants. I once taught high school English in New Jersey. I mean, to be creative and tell a story on-demand is down-right stressful. Who needs that kind of stress after nine p.m.?

My parents were better parents. When I was a kid, Mom and Dad would tuck me into bed and tell me stories about my grandfathers, or how mom and dad met, or about playing stickball in narrow Philadelphia streets. Bedtime stories were history. They brought my little universe into focus, shaped my identity, and instilled a love of storytelling.

As good suburban boys do, I fell in love, got married, and had three kids. Just when things were going as planned, in 2013, I was diagnosed with a progressive brain disease, called diffuse cerebellar atrophy or cerebellar degeneration. The disease degenerates my motor skills, balance, coordination, eyesight, and speech: a fall can lead to a head injury, weakening esophageal muscles to choking and asphyxiation, and so on—a veritable smorgasbord of potentially fatal complications. Two years later, sarcoidosis, a complicated autoimmune disorder that conveniently attacks every major body organ, was added to my list of health issues.

It was only when the prospect of death became real that I began writing.

In 2015, I created writeonfighton.org and for the next five years wrote and posted bedtime stories I never told my kids. By writing these stories, I began to reexamine who I once was, who I am now, and the man and father I hope to one day grow up to be. Writing made me realize that in the face of our inevitable death, we should make like Springsteen and do what we can to achieve our dreams.

As I wrote this book, time hardened, and passed. The kids grew up. My diseases progressed. People I love died. And one spring morning, standing in the driveway with my hands in my pockets, time’s yellow chariot turned the corner, the air brakes exhaled, “Bye dad” was said, and as the bus, my children, and a swirl of exhaust smoke disappeared down the street, I realized the irony of my effort. I was trying to preserve time while time was passing like a school bus in the morning. We can only soften time by doing what we love. Doing the things that make us feel alive. And I have never been more alive than when telling a story.

This is a book of bedtime stories for the living. Stories that, if I did my job well, slow time, and make you and me glad to be alive. These stories are real. Or as real as memory allows them to be. As I found out, life is both a funny and heartbreaking experience. These stories are the moments I want to share with you because I believe, deep in my dad heart, we all have stories worth sharing.

I came across an article about Marshall Duke, a psychologist at Emory University, who conducted a twenty-one-question survey of children throughout the 1990’s entitled, “Do you know…” which asked them about their families. The results showed that the more stories, both positive and negative, the children knew about the family’s history, the more resilient the children tended to be. As Duke concluded, knowing family stories was “…the single best predictor of children’s emotional health and happiness.” For better or worse, our family stories help us navigate our own troubles. Stories gift us courage when we’re afraid, offer direction when we’re lost, and comfort when we’re lonely.

Dear reader, please know that I’m humbled you are reading this book. Thank you. I hope my stories help you, give you permission to dream, and maybe give you the courage to tell your own stories. And I hope you paid full price for this book because college for three ain’t free.

But if this book doesn’t offer them financial prosperity, more than anything, this book is a gift to my children. It’s a family history, an instruction manual, an honest reflection about a fleeting moment, a smile, a glance, and the goodnight kiss I often failed to give them.

Maybe one day, when they’re lost or confused or angry or sad or daydreaming about the prom queen, they will open this book and read a story or one of the letters I’ve written to them. And maybe my words will let them hear my voice again. Feel my lips pressed against their ears. And maybe they’ll know they’re not alone. That Dad is here. With them. Helping them through life. Forever.

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