Epilepsy Update

I scrolled through my posts this afternoon and clicked on Here we go again. I'm so glad I took the time to write all of that down. Those feelings and fears have somewhat faded. I don't flash to his tonic-clonic seizure when I sweep that part of the kitchen or put shoes in their cubby anymore. I leave him home now without too much thought. The thought is always, always there, but I pray every day to help keep him safe and allow him as much normal as possible at the same time. However, reading through it all brought me right back to that moment and reminded me of the emotional journey we've been all been on. That truly was just the beginning and I decided to take a minute and give a little update.

I'm happy to report Kaleb has not had any seizures since that night. He is just over eight months seizure free. I used to count the time Kaleb was seizure free as if it meant something. I felt the longer he went without a seizure, the chance of having another one went down. I learned the hard way that wasn't necessarily the case. Kaleb had been four years seizure free (two off meds). I thought he'd outgrown them. I thought we had gone through the seizure woods and stepped into the seizure-free-for-life sunshine. I was wrong. At one of our neuro appointments, our doctor told us that when it is someone's time to have a seizure they will have a seizure. To make matters worse, we never know if the meds worked and stopped working and a seizure occurred or if the meds never worked and it just wasn't that person's time to have a seizure. How am I supposed to wrap my head around that piece of information? I'm not sure I ever will. But, for now, he is seizure free and I'm grateful for that. He's driving again and living a normal life. I am terrified. Not gonna lie.

The road to now has not been easy. The meds the ER started Kaleb on is called Keppra. If you are in the epilepsy world at all, you've probably heard the term Keppra Rage. Our neurologist described it as an emotion magnifier. It took everything he was feeling and poured gasoline on it. He was hurting so much. It was heartbreaking and so very difficult for everyone. I won't go into details of that time here. It isn't really a place I want to revisit. However, I don't want to forget it either. It was such a difficult, dark time and some days I wasn't sure how we were all going to get through it. It. was. hard. But you know what? We made it through. We walked through it and I think we are all better for it. We spoke with our neurologist about changing his meds and began the switch. However, it ended up being a two-month process. You can't just stop one and start another. Slowly the rage left and he worked through what he was going through without the extra emotional fuel. He also reconnected with his birthmom during that time and I think it brought him a peace he really needed. That's an entirely different post that I most likely won't share--it's his story to tell.

Kaleb had six-month check with his neuro this week. I had six months worth of questions and one was if these new seizures were related to his first diagnosis or completely different. (He was diagnosed with childhood-onset absence seizures and in Feb 2018 he had partial complex and a tonic-clonic). He said Kaleb was just unlucky because most don't have both. That sucks. I'm really not complaining, though. So many live with uncontrolled seizures and deal with so much more. I keep you all in my prayers, by the way. I truly do. You fight the battle every single day and night. We call you warriors for a reason.

So, in our home, we live like epilepsy isn't hanging out in the closet, waiting for a moment to strike. We set alarms to help remember to take meds and send texts threatening to call 911 if he doesn't respond. Seriously, kid. You need to respond! ;) We make plans to go to the beach and spend hours attempting to figure out geometry while we countdown to the end of high school math! We watch for signs, hug our children tight, and pray our epilepsy guest stays comfortable in the closet.

Sneak Peek

I haven't written in a while. Part of it is a bit of writer's block--I'm not exactly sure where I want the story to go--and part of it is the fact that I can't seem to get out of my own head. Those voices that rear up when we put a piece of ourselves out there are screaming and I lately haven't been able to tune them out. What those voices are hollering about shouldn't matter. Writing is therapeutic for me. I'd do it even if no one ever read it, but those closest to me see a potential in me I'm afraid I won't ever achieve. Those voices.

I do not have a grand resume in author terms (Ok, any terms!). I almost finished my bachelor degree in Elementary Ed but stopped when we adopted our son. I always assumed I'd go back...and I will. It's just taken much longer than I'd imagined. However, in two years when I do get back, I'm going to ditch Elementary Ed and go for something in the English world. Something that will help that resume of mine and hopefully make me a better writer. It certainly can't hurt, right?

I absolutely do not regret my life decisions. I look at my kids and even though they beg to be left in the after-school program at school, eye roll, I know they would miss me. I know they needed me present in their lives just like I know I need to write. It should be obvious, but I'll say it just in case--  if you chose differently that doesn't make either of us wrong. If your kids thrive in that after-school program and you held on to that career just as hard as you hold on to those babes, kudos. I am grateful life has taught me the grand notion of to each their own. I truly mean that. I know that what is right for me may not be right for you and that doesn't mean anything other than our choices needed to be different. I'm glad I stayed home but sometimes I do feel so far behind in the race. Those voices.

I pushed through those voices today and pulled up my latest project while I sat in the car rider line in front of the school. I scrolled to the top and began to read and guess what? I liked it. It is not perfect, but it is GOOD. I would read it! Ha! And with that thought, the voices were a little harder to hear. Before long, the line was moving and I was scrambling to get my seat where I could reach the peddles because goodness knows that car behind me won't wait long. The car rider line is serious business! As I tucked my laptop on the seat next to me, I marveled at how quickly time flies when I write. Seriously! I've begun writing and not realized darkness settled around me with the setting of the sun until I look up from my screen and find the room pitch black illuminated by only my screen. I truly hope I'm always surprised at how quickly time passes when I write. And those voices? Well, they are completely gone when I'm lost in the story...lost in time.

And, if you're still reading, I'd like to share the preface of my next novel. I THINK it will be called THE LAST OF THE DRAGON KEEPERS, but I reserve the right to change that name! Hope you enjoy.

*****

She slipped through the large battered door quickly, closing it behind her. She fumbled with the reluctant latch, eventually securing it in place. The room was dim, lit by only one candle. The scent of hay and the chicken she’d cooked earlier for dinner hung in the air. She leaned against the door while her eyes adjusted to the low light. She couldn’t see him, but she knew he must be there. She hadn’t expected him to be back so early. Her heart sank.

“Well?” His voice boomed through the silent room, startling her.

“We lost her,” she said quietly, head down. She knew what this meant. 

The man stepped from the shadows across the room and flipped the small table in the center of the meager space, causing the remains of her modest dinner to clatter across the floor. She jumped involuntarily. The solitary candle that sat on a small table next to her bed flickered and went out. Darkness wrapped around her. It didn’t matter. She focused on a tingling within her chest. Her senses immediately heightened. She didn’t need light to see the remnants of her dinner scattered on the floor or the upturned table now laying on its side, one leg broken. She didn’t need light to see him. She didn’t know what else to do, so she immediately began picking up the mess.

“Leave it,” the man said. The fire once in his tone settled into resignation. He stepped toward her and rested his hand under her chin. She reluctantly gave in to his gentle tug and stood. He brushed the tiny stray curls of hair that had refused to stay in her braid off her forehead. She let out the breath she was holding and melted into his arms. “It will be okay,” he whispered near her ear.

“How?” she asked as tears streamed down her face. “The Emperor won’t listen. He refuses to stop using the dragons as weapons, but I thought we could at least convince him to let them rest.” She lifted her head from his chest and wiped her face with the backs of her hands. “He will not acknowledge the dragons’ connections. When one is in battle, they all may as well be. How can he not see that?” Anger burned through her. She wiggled out of her husband’s arms and turned her back to him. “They are all going to die! If not from war, then from a broken heart!” 

He stepped around a chipped bowl and rested his hands on her shoulders. “I will not let that happen.” He wrapped his arms around her and pulled her to him. With her back pressed against him, she could feel the beating of his heart. “What about her babies? Are you going to be able to save them?” he asked.

She turned and faced him. “She protected her eggs until the very last moment.” She shook her head and choked down her emotions. “There are six. If we can keep them from the devastation their family members are feeling they should survive.” She ran a hand across her face. “I’ve successfully hatched dragons before, but never under these circumstances. She lifted her eyes to her husband’s. He looked so tired. She rested a hand on his cheek, fingering his thick beard. It had begun to turn gray these past months. This war was taking its toll on them all. “And your travels—I’m surprised you are back so soon. How many are left?” She held her breath not sure she wanted to know the answer.

“Four,” he said grimly. 

“Four! Only four Keeper families remain?” He nodded. She pushed away from him and began to pace. “That’s six down from only a month and a half ago. At this rate— ” She stopped pacing and rested her hand on her bulging belly. He stepped toward her and placed his hand on top of hers. He bent and kissed where his child grew. Normally, when he did this, she would ask him to use his Keeper senses to see how the baby was doing. She could and did so herself, but his extra assurance kept her worry at bay. At this moment, however, her mind spun so fast she couldn’t keep up. “What—how are we…” she stammered.
He stepped in front of her and clasped his hands around her face. “We, my darling, are getting out. All of us. We are taking the dragons and running. Tonight.”

In Case You Forgot...

It's done! The Ordinary is .99 for a limited time! Perfect time to give it a try. I'd love to hear what you think! 

And, in case you forgot...

Happy Anniversary!

It's late. Well, technically it's early, I guess. Our house has been hit by a nasty bug and I'm on watch tonight. Our oldest had/has (I never know if since he's still a child I can say had) childhood onset absence seizures. He hasn't had a seizure for a few years now, but I don't mess with fevers. They lower the threshold and make having one more likely. In ten more minutes, I can check him and give him more meds to make sure that fever stays down.

I turned to facebook to entertain my weary eyes and clicked on, on this day. I love that little facebook gem. I'll take that walk down memory lane every day. Thank you very much. Today's caught me off guard a bit. Memories definitely flooded over me and I began writing a facebook post about it. I realized quickly that it was turning into a very, very long post and decided it should be on the blog instead.

A year ago today, I did the hardest thing I'd done in a long time and clicked the publish button on Amazon making The Ordinary available to all. Almost a year before, I began writing it to pass the time while waiting for my son to do his homeschool work. See, that firecracker, amazing kid of mine needed me to be close by. Laundry and housework had to wait until he was finished and one can only plan and grade so much. I was bored. So, I did something my husband continually encouraged me to do. I began to write. One page turned into ten. Ten to thirty. Pretty soon I wasn't just writing while Kaleb worked. I wrote every chance I got. It was so. much. fun. My husband would say, "I'm taking the kids. Go write." And I did. And I loved it.

I, however, had no intention of ever showing that creation of mine to another soul...well, besides my husband! My husband read it as I went and encouraged me, but, he's my husband. He loves me. He never criticizes me and thinks everything I do is amazing. I'm not exaggerating. Really. I love him and his support, but I didn't believe him. I really wanted to. But, remember, I called this The Ordinary for a reason. I felt extraordinarily ordinary. I felt beyond ordinary. I couldn't see past that.

The day I finished it was amazing and so anticlimactic all at once. I typed the end, pushed my chair back and stood up. My hands shot in the air and I exclaimed to my empty house, "I did it!" I quickly texted my husband and that was that.

I spent the next few months editing it. My middle daughter wanted to read it, so I handed her the latest, marked up, edited version. I had gone through it once again and was putting the corrections in the computer. I gave her the first couple chapters and off she went. She came back not long after and said, "I can't read this with all your writing on there!" That was the start of something amazing. I read it to her and watched Natalie's journey come to life in one of my favorite people's eyes. She would come home from school and beg me to read it to her. She'd give me pointers, like Essentials and Ordinaries should be able to have Essential babies. :) And at night when it was time to tuck in, she would beg for just one more chapter. It. was. awesome.

It put me in a bit of a pickle, though. We were about 3/4 of the way through and my mom was coming for a visit. I live 2,000 miles away from family so they were none the wiser. I knew Kyleigh was going to ask me to read it to her and my little secret would be out.

We took the kids to Universal Studios that year for Christmas. We surprised them with the trip and also with my mom coming with us. She came out to the car with me to help bring a few things into the hotel. As we walked in, I said the words. "Hey, I wrote a book." She looked at me and asked what I meant. I tipped my folder holding the 200+ manuscript in her direction and said it again. "I wrote a book."

Her reaction was beyond amazing. She didn't care what it was. She was just so impressed I'd written it. Before she left, she asked to read it. I told her she didn't have to. I knew it was a genre she didn't necessarily like, but she really wanted to. The morning of her flight, I quickly printed it and she tucked it in her suitcase.

After that, I told a few more people. Five total. I looked into Kindle Direct Publishing because it was an easy way to get it to those five people who lived across the USA from me. I was going to put it up for free, but my sister said she wanted to be the first person to buy my book! Thanks, Vickie! So, after looking at the button for what felt like an eternity, I clicked publish. 

Look! There it is!

My husband had been on a business trip and returned home that day. We picked him up at the airport and stopped for dinner on the way home. As we sat there, I received a text from my sister that my book was live on Amazon! I can't tell you what I was feeling. It was a jumble of good and bad emotions I'm still sorting through. My husband declared he was going to post it to facebook and I wanted to die right there. All three of my babies looked at me waiting for my response. Had it been he and I, I would have told him no way. But, how could I say no with them watching? I want them to be fearless. I needed to be fearless. So I nodded and fought the urge to throw up. I didn't sleep well for the next two weeks. Seriously. I have never felt so vulnerable in my life. I hadn't realized how good I was at sitting on the comfortable side of fear.

What happened next was really pretty amazing. So many friends and family responded with surprise and support. So many people bought my book! I couldn't believe it. And the kind words and great reviews that followed buoyed me up and pushed me to do more.

One thing this journey has taught me is that kindness and support doesn't always happen. Truth be told I've been pretty surprised at some who have been radio silent. Those of you who stand in my corner and accept me, flaws, uploaded rough draft and all, I truly love and appreciate all of you.

I feel the love and am so very grateful!

Seriously! Thank you!

This next picture is just because I need to prove to you all that I do know a thing or two about grammar...despite my rough draft upload and editing blinders! You know. Because facebook tests are real. Muh-ah! Love you!