Search Results for: elizabeth

Elizabeth goes global

Elizabeth has been unique since well before she was born, surviving the loss of her twin when my water broke at only 10 weeks gestation during a flight between Switzerland and the US (the longest twelve hours of my life.)

Sometimes when life gets really difficult, when she’s having a “Bad Brain Day,” as we call it, to externalize her inability to think clearly or control her emotions, I hug her and tell her how thrilled we are that she’s here. We didn’t think we’d get any days with her at all. So even hard ones, where homework seems impossible, or, like a few weeks ago, when she had a seizure and threw up before the entire school at an assembly, are still good days. Any day with her in it is a good day.

We learned a few days ago that the manufacturer of the glue that holds on the electrodes during an EEG test wanted to use Elizabeth’s video as an educational tool for other parents. They had discovered, as we had, that there wasn’t a lot of footage of this, clear explanations about what happens when your child has to be wired for days at a time to monitor brain activity.

I can’t tell you how glad I am to have had the equipment I had that day to shoot the high definition video and stills to document our experience so that other parents would get a chance to calm their fears and those of their children. (And that I could keep from shaking too much as I hand-held the camera while she went through this.)

The video was reworked with an amazing song by Jonny Boston licensed through Triple Scoop Music. The company will be using it in several countries, and it is already up on their web site. I updated Elizabeth’s story, so others would have an idea of how she is doing. I can’t imagine living my life like she does–never knowing when or where or how a seizure will strike, what will be happening when she comes out of it, or who might have seen. She’s eight now. It’s a lot to manage. But she does great.

Here’s the newly spit-shined video. We’re going to put up another one soon–something FUN. She saw lots of kids on Amazon were upset that they couldn’t get their spinning plate juggling kits to spin, so we recorded her showing them how to do it properly (the kit took some modifications–all her ideas.) That’s my girl.

Elizabeth’s Not-So Merry Go Round

And the health care system goes round and round. My 8-year-old daughter Elizabeth and I feel like we’re getting tossed like so much Caesar.

When I was in second grade, our school yard had one of those old-fashioned merry-go-rounds, a metal circle with handle bars. You ran alongside it, and when you hit the perfect speed, you’d jump up and hang on.

Most playgrounds don’t have these anymore. That year, I was idly sitting on it during recess, reading a book. The football team came out to practice on the field adjacent to the playground. They decided I looked like I needed a little fun, so they began spinning the merry-go-round. Naturally, with six athletic teenage boys putting their muscle into it, I spun very fast. My book went flying off the bumpy metal wheel as I hung on to the handle, bracing my feet against the opposite bars in hopes of being able to ride it out.

But I couldn’t. Even though the boys stopped running and backed away, I couldn’t hold tight enough and flew off, landing in the gravel.

It could have been worse. Nothing was broken. I skinned one side of my leg and arm, a mass of blood, dirt, and gravel. The boys were terribly sorry and tried to hand me my book. I got tons of attention I neither needed or wanted. Shortly after, this merry-go-round was removed. I was blamed, and this ushered in a rather unhappy period of that year.

The way our world has spun since Elizabeth had to go on full-time anti-seizure mediation has been just as sickening, and I definitely feel the fear of a terrible crunch at the end. In this week’s whirl, we got our three-month supply of medicine only to open the box and discover the generic instead of the brand name.

Our neurologist had absolutely insisted we not do this particular medicine in generic, as we had done for the first month. The FDA only requires a generic dosage be within 80-125% of the correct amount of the brand. For a tiny girl like Elizabeth, getting 80% of the lowest dosage that she’s already on, since she is so small, means she may get seizures. Which means we’ll think it’s not working even if it might be. And of course, that she might have something happen to her, the always-fear when seizures are present for anyone.

To add to the fun, the suspension that the generic drug sits in as a liquid (she’s too small for any pill dosage) is seriously inferior to the brand name, making it appear like sour milk. We are quite certain that the cloudy liquid and the thick white chunks are not the same dosage, so we had to be super-vigilant about shaking it very very well. And even then, it seems like the bottom of the bottle is not the same color as the top.

We confirmed all this with our pediatrician yesterday. I ran to our local Randall’s, which had filled our interim prescription correctly with the brand name, and they delivered the bad news: since we had three months of generic from the mail order, the insurance wouldn’t cover it. We’d have to pay $186 a month for three months to get the brand name.

Upon calling the neurologist, we learned she had forgotten to uncheck the generic equivalency box. Her mistake, they were sorry. $600 sorry?

In more urgent news, all this delay meant we were OUT of medicine. Tick tock. This is an uncommon drug as a liquid and not stocked in most pharmacies.

Let me tell you, if you are ever in any sort of medical bind, I hope you get a pharmacist assistant like Cecilla at our local Randall’s, who, despite the fact the error was the doctor’s, and despite the fact that a mail order place got us the wrong medicine and it wasn’t anything to do with her, spent hours on the phone, negotiating with the insurance, putting in a medical emergency override, and getting us the rare brand name drug for $25, all within 16 hours.

I know most of us are at the mercy of doctors, insurance companies, and drug policies. But sometimes, people in the system do stand up for you. And sometimes, it’s not even the people you think it will be.

Elizabeth has gone 8 weeks without a seizure. We hope that means the drug, our second one to try, is working. She’s been to Magic Camp, finished her Pokemon game, and kept her nose in Gail Carson Levine books all summer. She just finished second grade. Our merry-go-round has been about as traumatic as that ride I took at her age, and the consequences have been, like mine, minor compared to what they could be. We see parents of children with heartbreaking problems and count our blessings. Certainly right up there on that list is Cecilla, who helped make sure that as the world started spinning out of our control, that we got the care we needed.

Seizures, daughters, and books that matter

Seizures, daughters, and books that matter

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 begin there.

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 the first scene of Elizabeth’s book, two teens meeting for the first time under the colored lights of a disco ball. The boy works up the nerve to introduce himself. They grin. It’s working.

Then the girl has a seizure and forgets he exists.

images for the book

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 teens like her. My fiercest goal is for other teens 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.

The Little Dude Book is here!

I’ve never had a book more people have asked for than this one!

A couple years ago, before we adopted Little Dude, I typed up the very first conversation between him and Elizabeth. We were out walking, hoping to find a good spot to view the super moon. It went like this:

Eliza: Look at the super moon! It’s so big!
LD: No it’s not! I could hold it in my hand!
Eliza: It’s only small because it’s far away. It’s a super moon because it’s closer than usual.
LD: I don’t see a cape. It’s not a super anything.
Eliza: Sigh.
LD: Can it be a Batman moon instead?

The response was tremendous. Friends and family wanted to know more about this Little Dude who had entered our lives. We were unable to share details or pictures, so our extended circle came to know him from the conversations I posted every so often.

The conversations covered the period when Little Dude was five and six, crossing the point when he went from a foster child to our adopted son.

I’m still quite protective of him online, but I believe the conversations we’ve had paint a very solid picture of our funny, mysterious, unique little guy.

Here’s the book you all wanted so much:

Welcome to the Dude’s Eye View.

Little Dude arrived in his sixth (and final!) foster home at age 4.

He brought with him a wicked sense of humor and a take on the world his foster parents had never heard before.

From his unique perspective, you’ll learn

• the logic of lint traps
• the necessity of bribing reindeer
• why Girl Scout cookies are suitable for breakfast, and most of all
• the importance of wearing a cape

Along the way, you’ll see a lost little boy (and his mom!) navigate the emotional and complicated world of adoption from foster care.

Ebooks:
Apple Books: http://bit.ly/LDude-Ap
Nook: http://bit.ly/LDude-BN
Kobo: http://bit.ly/LDude-Kobo
Amazon: http://bit.ly/LDude-Zon
Google Play: http://bit.ly/LDude-GP

Paperback or Hardcover:
Powell’s Books: http://bit.ly/LDude-Powells
Books A Million: http://bit.ly/LDude-BAM
Amazon: https://amzn.to/2DRKkvi
Barnes & Noble: http://bit.ly/LDude-hardBN
Indie Bound: http://bit.ly/LDude-InB

The Book That Almost Never Was — Elektra Chaos

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.

Why it’s hard to have a “happy” Mother’s Day

Mothers-Day-Butterfly

I generally don’t wake up on Mother’s Day to breakfast in bed or hand-colored cards.

I have five children, but they are not with me as this day begins. Here are all the reasons why:

  • My first-born, Casey Shay, died five months into my pregnancy.
  • My second and fourth, Emily and Elizabeth, are with their dad this morning, since we are divorced.
  • My third and fifth died early in the pregnancies.

I am lucky that I still have my mom. I know many of you no longer do.

And there are a lot of empty nesters who will make do with a phone call.

Some moms will visit their children’s graves today.

So I’m thinking of all of you whose Mother’s Day is not, never was, or no longer is that perfectly imagined day with little ones bringing you burnt toast and jumping on your pillows.

We still have something to celebrate. The moms and grandmothers who once held us tight.

The babies we carried, if only for a little while. Or the children we loved and raised as long as could.

It’s still an important day.

And I’m holding out my hand to you with love and understanding.

On those days that change your life for good

The first notable April 28 came in 1998, the day I learned my first baby had died.

I was teaching high school and the students were terribly excited to find out if I was having a boy or a girl. I was firmly instructed to call them on the journalism room phone the moment I knew. I only had a few more weeks to be with them, as I had resigned from my position to be a mom. School was almost out, and I wasn’t sure I would get back to teaching again (I never did.)

I didn’t call them. The sonogram showed a still baby, floating in his fluid. Lost to us.

We also had no answers. We just had to find the courage to do it again.

By April 28 of the next year, we had a baby girl, whose entrance to the world was stressful and constantly in question. But she arrived all the same, and just turned 15 a week ago. Her presence has made all the Aprils easier to bear.

By a strange collision of scheduling and timing, the next April 28 I was scheduled for surgery to correct my insides so that we could try to have a normal pregnancy in the future, without the risk of these late term losses, undersized babies, and such hardship. I remember distinctly the moment the nurses forced me to take off baby Casey’s memory bracelet, which I had worn daily for two years, and even during his sister’s birth by c-section. I cried all the way until the anesthesia knocked me out.

In April 2002, I was crazy pregnant with another girl. This pregnancy had not gone any more smoothly, a set of twins with one miscarrying at ten weeks. The other, Elizabeth, seemed fine. We would not learn until she was six that she would face challenges based on her time in the womb. They tried to schedule her c-section for April 28 and got a little miffed when I refused to agree. They sent the doctor in to convince me, but when he realized the date, he said, “Let’s neither of us show up.” He opted to work a different day, for me. So Elizabeth was born May 1.

Sometimes I think that after all these years, April 28 will have no power over me. That I can look back and think — it’s just a date.

But it’s not. It never will be. And for those of you who have traveled this road, you know what I mean. Some moments on our life’s calendar are never forgotten, can never be simplified or erased or overwritten by other events. And we wouldn’t want them that way.

14weeksaltered2.JPG

Emerging from the writing cave for this important announcement! :)

I’m super duper busy finishing out my Magic Mayhem series. This last book for this trilogy is the hardest, because it’s about a ten-year-old with epilepsy, same as my daughter Elizabeth. We’ve worked together on this book. But it’s difficult to have your child describe to you what it’s like to have these dark spaces she can’t remember, black periods before and after her seizures.

But while I’m doing all this (plus preparing to dive into Forever Sheltered in about a month), a book I sort of abandoned got picked up in a 10-book boxed set of paranormal romances!

love-charms-smaller-graphicAuthors put together these sets to increase visibility and share fans. Unlike my super-emotional and sad books, my novel in the bundle is light and funny. It’s a voice I set aside when my Forever series took off. My readers want to cry, not laugh!

But I let this book go into the bundle. There’s so many great authors in it. And at 99 cents, you can’t beat it for having some choices for your next sleepless night or long trip or need for escape.

I hope some of you will try it out. My novel in it is called The Passion Cure, about an enchantress who discovers not only does her family’s pet ferret talk, but it delights to inform her that she’s an outcast in her world, a Nix with no powers of her own.

It’s a romp, and an experiment. I had a good time writing it. I have outlined more books in that story world, but I’m not sure I will actually write them since everyone wants the Forever books!

So if you want to read my book The Passion Cure, pick up this bundle as that may be the only way you’ll ever get it!

Love Charms: 10 scorching paranormal romances for ONLY 99 cents! LIMITED TIME ONLY! (REGULAR PRICE: $9.99)
Escape into the world of paranormal romance, a magical journey featuring delicious demons, wanton witches, zealous zombies and more! Featuring spell-binding novels from popular New York Times, USA Today, Amazon, and Barnes and Noble bestselling authors, including Ava Catori, Selena Kitt, Cerys du Lys, Deanna Roy and more, these enchanting books will be sure to charm, beguile and bewitch you!