Read an Excerpt
CHAPTER 1
Can't Wait!
I KNEW I WOULD write a book about my kid. Just not this book.
Rebecca Danielle Adam Prashaw was born April 22, 1993, in Sudbury, Ontario. Suzanne, her mom, spent only seventeen minutes in labour, and then, swoosh, Rebecca slid into life's fast lane, never to put her foot on the brake.
As a record of her life and our relationship, I wrote my child a letter each year around her birthday. It took time to realize the letters might someday inspire a book. There was a story I wanted her to appreciate someday — hers, mine, ours.
I was a Catholic priest: a Roman Catholic priest who married when he was forty, becoming an instant stepdad to his wife's three children, and a year later, a first-time dad to one child, that kid with the interesting name.
I worked as a journalist, too. I like to tell and write stories, and I recognized a story here. The letters, I thought, would bind my story to Rebecca's story, so when the time was right, she would better understand the first chapters of her own journey. Or so I thought. That there was a book, too, was, well ... more a dad's hunch, a crazy intuition.
The working title for this book idea was Dear Rebecca: Love Letters from a Married Priest to His Daughter. I knew that it wouldn't be on the Vatican's blessed books list. That might work in my favour, I thought!
Those annual birthday letters chronicled the year's events: celebrations, family trips to California and North Bay, camping, cottage visits, outdoor adventures, the pet dogs and rabbit, and a few mundane moments, too, that still somehow captured life's wisdom. They also recount some madcap misadventures — I confess to a few missteps as a later-in-life dad on training wheels. Memo to Dad: venturing out in winter with your five-year-old onto the Castor River in Russell, Ontario, without first checking the ice is not a good idea; the unexpected polar bear dip to my waist qualifies as "top shelf" in the family legends.
The fifth-year birthday letter reports the epileptic seizures that first appeared out of nowhere at the breakfast table — dark, ominous clouds on an otherwise sunny horizon.
The eighth-year birthday letter tells of my own heartbreak over my separation from Suzanne, the breakup of a marriage that I did not want to end. Damn. Now there would be stories I'd prefer to omit from my book.
More dad letters follow in the next few years, charting Rebecca's significant challenges in learning and at school, some clearly the consequences of the epilepsy. This would be the place where I would revisit a wickedly fun period of seven years when Rebecca played goalie for various girls' hockey teams in Kanata, in the west end of Ottawa. Unknown to anyone at the time, what she learned in the goalie crease would tutor my kid for life's adversities. Tales are emerging, too, of first jobs, hints of first loves, and more.
All in all, I recognized a story worth telling, a tale of a mischievous kid who was impossible to subdue or defeat, a kid wrapped in her parents' and her family's love; in hope, worry, and wonder.
But life, and my child, had other plans. Sickness, heartache, and unimaginable, enduring courage elbowed their way into the story. The book that I imagined writing is not the book I am writing. Adam emerged as the co-author.
Adam?
Our Rebecca.
Remember the girl born in 1993 with the boy's name, Rebecca Danielle ADAM Prashaw? From very early on, Rebecca delighted in her boy's name. She never tired of hearing the story her parents told of how Adam became part of her legal name. Adam, of course, wanted this story, this book, to be something that he would help to write.
Rebecca was the quintessential tomboy. There were early signs of Adam everywhere — the short hair, cut pageboy-style some years; the "dressed down" rough-and-tumble look. We saw it but didn't see it. Rebecca was often thought to be a boy, as early on as age two. Rebecca's mom recalls the tough negotiation she had with Rebecca to get her to wear a First Communion dress. She made a deal that Rebecca could take the dress off right after the pictures — like a flash, Rebecca was gone, and the dress disappeared for a day or two before her mother found it under her bed. Before she pulled the dress off, we snapped the First Communion photo, a nick on her face from the latest mishap and, of course, the short crop of hair.
As friends came into our lives and we were asked the inevitable "number of children" question, Suzanne would say, "I have two girls, a boy, and a wannabe." In response to their inquisitive looks, she would add, "A girl who wants to be a boy."
I recall an early, fun conversation with my daughter when I asked her if Dad could at least see his daughter in a dress three times in her life. Could we agree on that? That semi-serious negotiation resulted in Rebecca committing to wearing a dress on three occasions — her First Communion (which she did!), her wedding day, and, hell, I can't even remember the third day she promised. It doesn't matter. She reneged. And in the story this crazy kid would live, there actually was a wedding day. Well, sort of, but it was one minus the dress. That story will be told here, in this new book that Adam and I are writing.
Things are clearer in hindsight.
Unquestionably, from that day at Sudbury General Hospital in 1993, it was love at first sight. I was forty-one years old, a new dad, "over the moon" happy. I never saw or had a need to see "Daddy's little girl" in Rebecca. Well, maybe a little, a nod to that "wearing a dress" negotiation! Indeed, I was punch-drunk ecstatic about being a dad of any child at all.
I guess the gender thing was there from the start. But it would take a lot of years, well into adolescence, for Adam to show up.
* * *
Adam made his official appearance in 2014, at twenty. His "coming out" was sandwiched between two major epilepsy surgeries in 2011 and 2015. We had called our kid Rebecca, or Becca, for short (and Bekkaa on Facebook), for almost twenty years, from birth through to 2014. I've sorted out my Adam/Rebecca story this way: the first happy, healthy childhood years, from birth to five (1993–1998); then the years during which the first series of smaller seizures occurred, from five to ten (1998–2003); then the more-or-less typical preteen and teen years, from ten to seventeen (2003–2011). The final part of the story takes place after the second series of bigger, more threatening seizures start in 2011. It is in the second, scarier epilepsy phase that Adam shows up, writing his own impressive new birth announcement. My co-author can't wait to tell that story.
There are other stories to tell, too — visits to the Montreal Neurological Institute and Hospital (many call it the Neuro), getting her driver's licence at sixteen, and a remarkable, life-changing conversation with her mother. Adam wants that in HIS book, too. "Her, she" is history. Adam will become my teacher on pronouns.
Somehow, bound and determined as he was to live a full, normal life, epilepsy and all, Adam, I sense, wanted to stay in the driver's seat, even after he lost his licence because of his seizures. This is his life, his story. It was him behind the wheel, driving his parents crazy at times in a madcap, fast-lane race to adulthood and the independence he keenly craved. As he endured the epilepsy surgeries, as he chose to come out and come in to Adam, I marvelled at a new meaning of courage.
And through it all, in what was undoubtedly a hard life capped by one cruel catastrophe, he wove in a heap-load of fun. He did it with amazing friends, the steadfast support of family, and most of all abiding steadfastness, as Adam saw it all through to the end.
This is the story of Adam (Rebecca).
Dozens of Adam's Facebook posts will help tell the story. I have not dared to change a single word. If it seems like Adam appears out of nowhere sometimes to jump into the conversation or start another conversation, well, that's my son. If you wince at some of his posts, know that I winced first.
Soar, Adam, soar.
CHAPTER 2
"A No-Brainer" #seizurefree
November 25, 2015 Montreal Neurological Institute and Hospital
ADAM IS IN excruciating pain.
His bottom lip is quivering. Tears are rolling down his cheeks. His lower jaw convulses, shaking uncontrollably. I can't recall ever seeing him cry like this. I have definitely seen him cry before, watching sad movies and at stuff from life, like saying goodbye to favourite family pets: Murphy, our eleven-year-old yellow Labrador retriever; Molly, an Aussie cattle dog; Josée, Aunt Sandy's husky-terrier cross; and Oreo, a rabbit who was his "best Christmas present ever!"
But these tears tonight are nasty — pure hell for a parent to see — hinting at the pain that Adam is suffering.
We are at the Montreal Neurological Institute and Hospital. I have lost track of the days, but the calendar says it's Wednesday, November 25, 2015. In the late afternoon, nurses give us the green light to see Adam in the recovery room. He is coming back to consciousness after an eight-hour surgery to remove a tiny section from the deepest region of his brain. The doctors wanted to completely remove the piece, which appeared to be triggering increasingly frequent and serious epileptic seizures that undermined Adam's stellar attempts at a normal life.
Brain surgery for our kid. I must have missed that page in the parenting manual.
This operation is his second brain surgery in four years; the first operation happened in September 2011, done by the same doctors at the same hospital. I guess we are back in the same ICU. The big difference is that my kid is now called Adam, not Rebecca. I'll get him to tell that story when he's fully conscious.
Holding Adam's hand, stroking his hair, I'm a bit brain dead myself, numbly, trying to recall the series of events that got us here. I look at my Adam on the hospital bed and see from long ago our tomboy, Rebecca. Rebecca Adam — both names are part of his legal name. It's complicated. He needs to wake up and tell the name story. He tells it so much better than I do.
Where have the years gone? He's twenty-two now.
As a young child, starting around five, our Rebecca Adam began a five-year period of smaller absence seizures, the kind the older generation called "petit mal" seizures. They started one morning at the breakfast table at our family home in the village of Russell, east of Ottawa. Rebecca was amusing her brother, David, and sisters, Lindsay and Lauren — a common spectacle. She was often the entertainer in the family, seizing centre stage as the youngest. She loved an audience. That morning, over and over again, she whipped her arm in a Ferris-wheel motion, holding a spoon of cereal. We laughed. It seemed part of her attempt to entertain, but in fact, a seizure was happening. Suzanne, Rebecca's mom, recalls the details better than I do: "Rebecca seemed frozen in time, just stopped, and was eerily still, barely breathing for what felt like an eternity — but, in reality, about five minutes. Then, with a very deep sigh, Rebecca slipped into sleep for hours from the strain on her brain and body."
That episode hurtled us through a frightening door: accompanying our child to specialists and hospitals and learning the names of a variety of epilepsy medications — Depakene, Dilantin, Keppra, Lamotrigine, Clonazepam, and others. Suzanne is far better than I am at remembering their names and dosage. Most of the absence seizures were brief, between five and fifteen seconds. We might have noticed a blank stare or vacant look. When those seizures were over, Rebecca often resumed what she was doing. But there were other, partial complex seizures in specific parts of the brain that left her confused when they ended.
My letter to Rebecca written for her sixth birthday captured new worries.
June 9, 1999
I looked at you last night, your frustration and tears, your not being in good space, which is unusual for you, and I was worried, quite aware of my fears for you about the epilepsy, how much it will dominate your life, how long it will be with us. We have been told that the odds are good that you will grow out of it. Your first seizure occurred last September and scared us when you went rigid and fell into your trance. One day I hope you will know what that worrying and wondering is all about that we as parents store up in our hearts. We literally carry you in our hearts ... I thought ahead to the questions of driving a car and being pregnant and would any of this be affected.
The epilepsy meds would control the seizures, more or less. We would learn later that other seizures were happening in the brain that we did not observe. Together, all those seizures affected Rebecca — her memory, learning ability, and personality. There were mood swings, too, some triggered by the meds. There were new frustrations and tears. Yet she soldiered on. "Normal" — as in not sick and like friends — was where she always headed.
Was it around age five that our kid started to fall behind? All those seizures began to take their toll. The report cards coming home in those early years had a common theme. Grade one: "Not taking the time to complete her tasks," and "Sometimes accomplishes her work with haste rather than care." Grade two: "Likes to hurry writing without understanding assignment."
I typically rushed through those teacher comments to find the other, inevitable note on my child being a pleasure to teach. Rebecca attended French language school. The grade two teacher commented: "Rebecca est gentille avec les amis en classe." (Rebecca is kind with her friends in school.)
A few years later, a school-referred psychologist identified mild ADHD. His report spoke of Rebecca's lack of concentration and of her being overwhelmed by homework, easily frustrated, wanting to rush through work, and not easily retaining what had been learned or read. The psychologist reassured us that it was mild ADHD, unlike, for example, that of another of his patients, whose severe ADHD, he said, was like "having five televisions on simultaneously in the head."
The mix of Rebecca's ADHD and the cognitive damage from the seizures was a dangerous cocktail. School and life challenges were emerging. At times, I suspected Rebecca misunderstood the purpose of school. Don't I get bonus marks for being the first one done the assignment, first one out the door after a test? What, you expect correct answers, too?
My Rebecca was in the fast lane, speeding. It started early. She was in a shoulder harness at two years old for ten days after breaking her collarbone, a harbinger of future misadventures.
My parental homework bribes worked short term for this kid who lived always in the "now" and never the "later." I noticed Rebecca's multiplication tables vastly improved whenever I dangled the promise of Tim Hortons chocolate milk with whipped cream and chocolate sprinkles. The whipped cream on the nose and chocolate moustache made 9 x 8 bearable. Unfortunately, by the next day, she had forgotten 72. Well, no problem. More whipped cream and chocolate sprinkles.
* * *
Tonight, here in the recovery room after the brain surgery, we look around for nurses to relieve Adam's intense pain. I spy the cast on Adam's wrist and shake my head: this is minor, a sideshow fracture. A flashback to the collarbone shoulder harness Rebecca wore at two! Just five days before the scheduled brain surgery, Adam had informed me that he went to Emergency with a girlfriend late one night to have a wrist fracture confirmed.
(Continues…)
Excerpted from "Soar, Adam, Soar"
by .
Copyright © 2019 Rick Prashaw.
Excerpted by permission of Dundurn Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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