Poignancy

Seizures, daughters, and books that matter

Seizures, daughters, and books that matter

/ Books, Elizabeth, Poignancy, Writing / /

In the life of an epilepsy mom, the longest minute of your life is the one when your child stops breathing.

Elizabeth with friends after seizure
Elizabeth (center) on her 14th birthday with friends who surrounded and helped her during a seizure.

I’ve been through it more than once.  I’ve seen Elizabeth turn completely blue on the floor of a restaurant.

I’ve dried her off, shivering, after seizing in a downpour at Disneyland.

I’ve snatched her off play equipment, lifted her out of swimming pools. Once I slammed my way through a crowd at a football stadium after she got just enough warning to march off the field during a halftime show. She hid behind a bench to avoid anyone in the huge audience pulling out a cell phone and hitting record while she seized.

Being a teen with epilepsy during the era of instant social media has extra challenges.

Today, Elizabeth turns 19. Her last year as a teen. After taking a gap year to avoid the perils of catching Covid 19 while battling epilepsy, she’s planning for her first apartment, for her classes in the fall.

It’s time to let go.

Elizabeth graduation
Elizabeth made a Coronavirus piñata to smash after losing prom and graduation to the pandemic.

I’ve written about her many times on this blog, filed under Elizabeth. It’s been a long road as anti-seizure meds often don’t work for her. As she moved to her teen years, we spent a week at Dell Children’s Hospital to see if she was a candidate for brain surgery. (She isn’t.)

I learned about the Disco Room in the epilepsy ward, where teens with seizure disorders could meet each other and dance without fear of the lights, as nurses waited by the door. The moment I saw it, I knew absolutely, the book I would write for Elizabeth would include it.

Elizabeth wired into the Epilepsy Monitoring Unit. She made crafts with friends to spend the time. She and I had a movie marathon on the nights she was expected to stay awake all night to induce a seizure.

I didn’t write it right away. Elizabeth’s condition deteriorated during that year and we struggled to find any treatment that would work for her at all. During the worst period, she had two seizures in a day. Sometimes they began with her terrified screaming that would unnerve even the calmest of nurses or emergency techs before she fell unconscious.

A few months later, when we thought we had a medicine that was helping, it happened again during a field trip with her American Sign Language class. I got the call and raced to the mall, noting four enormous red fire trucks at the entrance. Were they for her?

They were.

As I ran down the walkway, eight tricked-out fire fighters strode through the doors like the opening to a big movie action-adventure scene. Elizabeth was going to tell me all about them! Except when I found her with the EMTs, she didn’t know what I was talking about. She had no memory of walking through the mall, of collapsing, and certainly not of eight hunky fire fighters surrounding her and clearing space.

Three years later, she still doesn’t remember them.

Elizabeth with her car
Elizabeth surprised by the pink car she always wanted.

Epilepsy patients often lose as much as a half-hour before each seizure, so it wasn’t unusual. Still, I studied memory loss with seizures and learned about how the hippocampus part of the brain could be hit.  I found cases where seizures caused complete, permanent memory loss. One more thing to worry about.

But in late 2018, ten years into our fight, we got a miracle — a new anti-seizure medicine combination that worked. Months flew by with no problems. Elizabeth learned to drive and got her first car. The independence we weren’t certain would ever come had arrived.

I never stopped thinking about that Disco Room, so I wrote that scene for Elizabeth’s book, two epilepsy patients meeting for the first time under the colored lights of a disco ball. The guy works up the nerve to introduce himself. They grin. It’s working.

Then the girl has a seizure and forgets he exists.

I spent three years writing and revising. I queried it out in each iteration, learning from the kind words of agents who thought the concept of epilepsy and memory loss was important.

And finally, I got it right.

I’m pleased to announce I’m represented by Jess Regel of the Helm Agency. She has a brilliant vision for the finishing touches of the book, and then we’ll try our hand at finding a publishing home.

My journey as Elizabeth’s mom will never be over. I’ll still be racing across town at the call from someone who finds my number on her emergency alert bracelet or pulls it from her phone.

But the book we envisioned together has finally found its footing.

We hope it finds its way into the hands of people like her. My fiercest goal is for others with epilepsy to see themselves in the story and read about how to cope, and more importantly, about finding the love we all deserve.

Happy Birthday, Elizabeth. The journey has been long, and hard, but I’d do it all over again to arrive at the wonderful young woman you’ve become.

Forever Innocent, 7 years later

Forever Innocent, 7 years later

/ Books, Poignancy, Writing /

Radish

Late last year, I was contacted by Radish, a reading app for phones, asking to publish a long serialized version of my series that begins with Forever Innocent. With six books, they told me, I would have a successful run with their readers.

So in January, we began the process of breaking the books into episodes, a lot like a TV series, so readers could unlock a chapter a day and begin the story of Gavin and Corabelle that I completed so long ago.

Tomorrow, the final episode of the very last book will go live.

Radish allows readers to comment on episodes as they read. The feedback on this tender, emotional story (which many readers call an “ugly cry”) has been amazing. It’s different from the reviews I get on the main book platforms like Amazon or Apple Books, where they talk about their experience with the entire book, one they may have read in a single long sitting.

These readers are experiencing the book a day at a time. And because of my writing style, where I rarely skip even a fictional day (I have entire novels that take place over a scant 72-hour period in the characters’ lives), it’s almost like you’re living the story.

I’m having a wonderful time talking with these new fans, learning about their own lost babies (so many, too many), and seeing their reactions in real time.

If you’ve never read the Forever Series, you can do that on your phone whenever you want. The setup is that one episode unlocks for free every day. If you get anxious to keep going on a given day, you can pay to unlock them faster. It’s not a lot, less than fifteen cents an episode.

I’m excited to see the direction books go in the coming years, from print, to eBooks, to apps like Radish. And as we celebrate the final chapter of my Forever series all over again, yeah, I’m shedding a lot of tears. I’ve been reading along with the new fans. Taking in the story after all this time is magical, as if someone else weaved the story and gave it just to me so that I can also remember those hard days after losing a baby, and relive the wonder of when I did finally get a family of my own.

If you’d like to check out Radish, look for it in your phone’s app store. To go directly to Forever Innocent on Radish, click here.

Rainbow Babies, Bonus Books, and the Ugly Cry Queen

/ Books, Emily, Poignancy, Writing /

When I lost my first baby, I didn’t think at the time I might one day write about it.

I was so alone in the world. I had just quit my job to be a mom. My Bunco group had turned into an endless series of baby showers for its members. That was treacherous territory now. So I quit. I spent my days in solitude.

My husband was bewildered, as many spouses are, at the length and depth and breadth of my grief. I half-heartedly looked for other jobs, but mostly I planted flowers and tried to make peace with something that would never, ever make sense.

By the time I got pregnant with Emily, I was more than a little dead to optimism. There was definitely a point when I started bleeding that I completely gave up hope and assumed she was dead. (Spoiler: she’s a freshman in college now.)

I have a public journal that I kept with her, as by that time my mission to help others who had lost pregnancies was in full swing at

Inspiration from Stevie Nicks and the 24 Karat Gold Tour

/ Music & Movies, Poignancy, Writing /

It’s midnight-thirty and I have a passel of kids home for spring break, but I’m going to write this because it’s exactly what Stevie Nicks would do. I know this because she told me so.

She’s on tour with her solo songs, things she wrote outside of the Fleetwood Mac sets, so the stories behind the lyrics were a prominent part of her concert.

She’s an inspiration without even having to try. She’s 68, still touring (in heels!) and her voice is as distinctive and true as anything you’ve heard in a recording from any of the last five decades.

You could be inspired by her stories of unabashedly calling up Tom Petty or Prince to collaborate or play a song she just wrote (or, in the case of “Stand Back,” rewrote based on “Little Red Corvette.”)

Or you could take her “Follow your dreams” speeches — and there were several mixed into her concert material — at face value.

But here’s the story I found to say it best.

Stevie is a struggling young artist working two jobs, as a waitress and a house cleaner. She writes songs as she can, and finally gets enough attention in the industry to record her first album.

The album comes out and is released to the world, the culmination of her dreams, hard work and distinctive voice.

And she remains a waitress and a house cleaner.

Nothing really happens. The album goes nowhere. Her label drops her.

But here’s the thing. Artists make art. So she kept right on going, kept writing, kept singing. From looking at snow covered hills from a rich person’s house to inspire her to write “Landslide,” to trying to honor the tragedy of Hurricane Katrina in “New Orleans,” she held tight to the things that spoke to her, and retold them in song.

Then one day, Fleetwood Mac called.

It’s possible (and, in fact, quite probable) that your first efforts at your passion will move invisibly through time, impacting only you.

But you are the most important person. Without you, that art never existed in the first place.

The only opportunity that is lost is the art you never make at all.

Based on all the things I felt moved to create after tonight, I’m going to be doing some collaborating after the release of my next series (15 days until Forbidden Dance, y’all.) And also telling a few more stories about the inspiration for the stories. And asking other authors to do the same. It’s important.

Sometimes the best way to inspire people to follow their dreams is simply to follow yours.

The Book That Almost Never Was — Elektra Chaos

/ Books, Elizabeth, Poignancy, Writing /

When I first started writing Elektra Chaos, things hadn’t gotten bad yet. My daughter Elizabeth, who is on the cover, had been diagnosed with epilepsy for four years at that point, and we had the seizures under control.

She was still going through a lot, as the medicine made her gain a lot of weight, and her previous friends had dumped her. But some of the other girls with a little more weight to them had picked her up and dusted her off, so we were getting through fifth grade.

I was about halfway through this book, which features a girl with epilepsy — the story Elizabeth wanted me to tell — when everything fell apart. The seizures returned. She couldn’t go through a week without one. Her life was regularly in danger as she tried to do normal things like climb playscapes or go swimming.

Then the medicine quit working completely. We tried another, and this one made her sick and listless. She lost an incredible amount of body weight in a dramatic few months. She couldn’t eat. Her skin got wounds that wouldn’t heal. I began to think she wasn’t going to come out of this. I began to wonder if my future was one without my little girl.

So I quit writing the book.

I still cry just thinking about those days.

With the help of our pediatrician and neurologist, we did get it turned around. We had three good years in middle school before everything started to fall apart again last summer. We’re still in that hard place, and to have the finished book come out while I’m back in darker days hasn’t been easy. Those who follow our story over on Facebook know she was discovered at Disneyland in a puddle, unconscious, having a seizure. They are a constant right now, anytime things get too loud or she feels off. We’re struggling to find a new way to control them.

But the book is here, and it’s important to us.

Elizabeth wanted to see an adventure story where the girl has seizures, and saves the world anyway.

Kindle iBooks Kobo Books a Million Nook

In this magic adventure novel, Elektra’s epilepsy is important, but not everything. It’s a story about a girl who thinks she’s meant to be the bully, the bad guy, and that makes it easier for her to handle the weirdness that comes with having such a difficult, embarrassing problem like seizures.

But suddenly, her magic power is asking more of her. To change. To be the hero she’s never thought she could be. At least she aims to try.

The book is written for 9-12 year olds, a lot like the original Harry Potter or early Rick Riordan books. I’m pleased to be done with it, but even MORE glad when my little Elektra at home finds a stable place again.

You can also see the other books in the series.

 

You can read more about Elizabeth in these blog posts.

Are you ready for me to blog about ALL THE THINGS?

/ Books, Poignancy /

Because, I am.

Because I just got my head above water again.

I’ve been on a journey. An important one. A super big one. But it got harder than we ever thought it would. And then, a few months ago, it became impossible.

We are still adopting our little boy. Things are on a different track than they were, but we’re sorting through what will be the best for all the members of our family.

And during all this, my mom died unexpectedlymomweb in her sleep. This crisis on top of the ongoing one put us underwater. There was so little keeping us going.

But I’m here now. Back. Hopefully able to talk to fans, and write books without dying from the pressure of even getting a few paragraphs down. And so, looking at all I missed talking about, to catch up the blog, here is what happened:

My trilogy for kids is being released by Spellbound River Press!  Jinnie Wishmaker has already been re-released. Marcus Mender will come out in the fall. And (now that I can finish it!) Elektra Chaos will be out next spring!

all-stacked-cover-3D-600width

I wroweb-Billionlaires-Ballet-by-Deanna-Royte another book this spring, a standalone romance called The Billionaire’s Ballet. It’s a fun story, inspired by Sabrina, and a light summer read.

My Forever series hit a ridiculous number of books sold. It’s just awe-inspiring to me to see these books go. You guys write me every day about how the story impacted you, and your notes truly kept me going. The response to the video on the series was also just tremendous, and we’re at something crazy like 800,000 views on Facebook. Thank you.

Forever-series-hardcovers

Here’s to being back in the world again, not just head down and slogging through immeasurable struggle.

Okay, this one’s gonna end in tears

/ Books, Poignancy, Writing / , , , , /

In the summer of 2013, I had a problem. Kurt and I had just given up on getting pregnant and I had two surgeries in a row sealing the deal. No babies for us. Not biologically ours, anyway.

We started looking into adoption. We knew it was expensive. We were solid financially, but finding another $30k was gonna be tough.

I was still doing photography and had published a few books — Baby Dust was out, and did all right, but nothing that would pull in that kind of money. I wrote two romances but they flopped totally and went in the red.

I was fortunate at that time to make a couple really important friends. One was Mimi Strong, who I’d met on Kboards. Another was HM Ward, who had a similar background as me, photographer turned writer, and also lived in Texas.

Mimi had some big success with a billionaire series she had written and took me under her wing. We looked at my current fan base, all baby-loss moms, and where to go to expand. She told me new adult romances, set at college age, were the big thing.

Well, I had tried new adult already, twice, and those were flops. But she insisted I had done it wrong. So she coached me. Mimi made me sit down and come up with a college romance that hadn’t already been done but would have a very strong hook. Something only I could write.

Well, of course I knew what it had to be.

The character of Corabelle came first. Her baby had died. To make the story happen in college, she had to be a teen mother. Then Gavin, her boyfriend. He had to have something in his past that made him take off when the going got tough, even though he had loved Corabelle.

And I had to find a way to get them back together that wasn’t too hokey. And I had to keep them apart enough to make a book.

Into the fall we worked on the book, Mimi reading my work and telling me what I was doing wrong. When it came time for covers, Mimi was insistent I have the right look. We pored over images, trying to find something that wasn’t overused but still affordable since I had such a low budget (although the moment mine came out, the same image popped up everywhere.)

Here are the couples who didn’t make the cut (and I know what you’re thinking — no way any of those were Corabelle and Gavin!)

old-fi-cover-mocks

We did everything we could think of for the book release. Blog tours. Goodreads giveaways. NetGalley. A book trailer. Mimi was pushing it out to her fans.

And it was doing much better than my other books. Way better. But after a week, it just started to dive. If it was over now, that was it. It would earn out its costs, which were a lot more than my other books had been, but that was about it. Kurt and I talked about me going ahead and going back to work, even though I’d have to quit when we got the children. But at least to earn the fees.

Then I took a wild chance. I knew HM Ward just a little bit. We’d messaged some. She was huge at the time. Just huge. Her Arrangement series was topping every chart. And I boldly asked if she would share my book with her fans.

She didn’t respond for two days. I thought, okay, I’ve overstepped. No way would she do a favor like that for someone she barely knew. I was a little embarrassed to have asked.

I remember going to a football game that night. My daughter was a freshman and marching at halftime. My parents were in town too, to see her. While we waited for them to come out, I pulled out my phone to see how much farther my book had fallen in rankings.

And almost fell out of my seat.

I had sold 1000 copies that day.

I frantically checked my messages, and sure enough, HM had sent a message. “Posted it. Think I sold a couple hundred. :)”

This visibility set off a chain reaction. The book didn’t fall. I hit #4 on iBooks. Top 50 BN. I came breathlessly close to the top 100 on Amazon.

Over 700 readers signed up for my mail list to find out about my next book. Everyone was asking — what’s it going to be?

And a big chorus was insisting — Corabelle and Gavin’s story isn’t over.

I sat down immediately to write Forever Loved. This book did just as well as Forever Innocent. Sell through was something crazy like 90%.

We had done it.

Now, two years later, we’ve come to the last book. The business changed a lot, and college romances fell out of favor. But I wrote a few more. A set of the first three books hit the USA Today bestseller list last January, a huge accomplishment. I couldn’t be more pleased with how it all went.

Forever-series-hardcovers

I’d love to show you a picture of the two little boys who live with us now, but it’s not time yet. Just know that they are here, and that all you fans were instrumental in getting them here. And that putting this series to bed is like tucking in your child for the last time before they leave home. It’s hard.

But what a journey it’s been.

I will be writing a little more slowly now but plan to have a book out in May and a new series starting in the fall. You can stay in touch with me on the email list.

Enjoy the trailer. I have loved being on this road with all of you.

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What’s in a date…

/ Poignancy /

caseyshay16weeks

Today my first boy would have been 17.  I can’t even fathom what sort of life I’d be leading if the fork in my road hadn’t gone the way it did, if Casey had been ours to keep. No Emily, for sure, as she couldn’t have come along in time. And probably not where we are now, about to bring more children into our home.

No matter how my life changes, no matter how many years pass, I do not forget. You could make a case for, “It was meant to be” and “Count your blessings,” but sometimes those platitudes just don’t apply. And all that’s left are the “What should have been.”

He should have been…here.

On loss: The disappointing day that never was

/ Poignancy / , , , /

caseyshay16weeksIf things had gone as planned with my pregnancy sixteen years ago, I would have one ticked off teenager right now.

For one thing, this would be just about the worst sixteenth birthday in the history of sixteenth birthdays. It’s supposed to be Independence Day #1, because in Texas, this is when he could have tested to receive his driver’s license.

But it’s a Saturday. The DMV isn’t even open.

To add to the insult, it’s raining nonstop.

I imagine a cranky boy joking and getting shoved by his friends as they shovel in cake. Looking out the window at the rain, wishing it weren’t a Saturday. The ONE TIME he finally gets a weekend birthday, and it’s the one he doesn’t want to be a weekend!

But these scenes are only in my mind. They aren’t happening. They will never happen.

He won’t drive a car. He didn’t even live to know cars existed. The only way he probably even knew his mother existed was a steady beat of sound that mirrored his own, a slow heavy thud that underscored the warbling muted voices through the walls that held him suspended in the only world he would ever know.

Happy Sweet Sixteen, Casey Shay, wherever your spirit resides these days.

[ More about Casey Shay ]

On Parkinson’s, suicide, Robin Williams, and art defining life

/ Poignancy / , , , , , , /

When the first headline mentioning Robin Williams’s private diagnosis of Parkinson’s crossed my feed, I wanted to collapse with shock. I couldn’t believe it.

I’d already been on a two-day crying jag about his suicide. He was a big part of my childhood, and his face was very familiar to me from so many amazing works. But I didn’t know him. I couldn’t understand why I couldn’t seem to recover from the news.

I think at first it was because it’s so hard to see someone so beloved, so talented, with so much love in his life, doing this, taking such a final step.

But now, I understand another piece of the puzzle.

For the last year, Parkinson’s has been a big part of my life. My mom was diagnosed, and with every drug change, every new protocol, she calls and asks me to look up side effects, drug combinations, what she can expect.

It so permeated my life that when I wrote Forever Loved and needed a patient for my character to take care of in art therapy, his story line was much like Robin’s:

A great and beloved painter attempts suicide when his diagnosis of Parkinson’s stirs up fear that he will no longer be able to create his art.

I’m starting to understand now just how profound this situation can be. In Forever Sheltered, when this artist takes center stage, the art therapist, who attempted suicide at the age of seventeen, says this:

Albert really must have fallen hard to attempt suicide when his talent was so visceral. Even with the struggle to control his movements, he was easily the best artist I’d ever met or studied under, even in college.

If I were unable to do the one thing I loved, if some disease took that away, I’m not sure I would do any better. One thing I told the students who attended my suicide talks is that once you choose death as your destination, it never goes away. Every upset, every disappointment, every setback has the same way out. You don’t even have to search for it to know it’s still out there, waiting for you to stumble one more time.

In that, suicide wasn’t that much different from alcoholism or drug addiction. You could go to rehab or therapy. You could get it out of your mind for a while. And life could go well for months or years or decades.

But the moment it didn’t, in that instant when your depression or your struggle or your exhaustion hit that critical point, it all rushed back. And your mind went straight to the place you thought you’d twelve-stepped or group-sessioned out of existence. The needle. The bottle. The knife.

I wish there had been some other way, that there had been some treatment, some quick intervention, some help that could have gotten to Robin in time. My story has a much happier ending. Albert does find a way. He does figure out how to manage. And he starts to recognize the treatments will go up and down, work for a while, then fail, then another will work a while longer. It becomes an act of faith to believe that another good time will come, to counteract all those thoughts and emotions coursing through him without his control. But he managed to figure out that the disease didn’t define him, and that he could muddle through.

There was so much greatness still to go for Robin, and it is lost to us now. His brilliant ad libs, his appearances, his voice and acting that added so much to every project he was in. But I am grateful that we got what we did, and that his family shared him with us. And that his life, in death, sheds a little more light on an issue we could stand to learn a lot more about.

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