It’s Time to Wake Up, Sleeping Beauty :: Living with KLS

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We all have our favorite Disney princess stories. I always loved Beauty and the Beast because Belle loved books almost as much as I did, and who wouldn’t want to be the girl to make a bad-boy turn from his wicked ways?

For a lot of little girls, it was always the story with Prince Charming swooping in to save the day that defined true love and romance. I guess I’ve always wanted to be the one to save the day and the prince.

I don’t believe in fairy tales anymore.

I wish I may, I wish I might wish upon the first star I see tonight…I wish for the fairy tale of Sleeping Beauty to be real and that true love’s first kiss could wake the beautiful girl from her slumber. Ensuring she and her prince live happily-ever-after (HEA).

I write romance for a living, and I love nothing more than making sure every hero and heroine get their HEA, but as a mother of real-life sleeping beauty, I can’t change the narrative of this story and it’s no fairy tale.

“Oh dear, what an awkward situation.”

Early November 2017, I was checking grades in Parent Portal for all of my girls. The second quarter was quickly coming to an end and I needed to make sure they were all still on track. I had a tenth-grader, an eighth-grader, and a sixth-grader. My tenth and eighth-grader were doing well, as expected. My sixth-grader, however, was not. I knew something wasn’t right, I just didn’t know what it was.

I called her into my bedroom to talk to her about her grades. The conversation went something like this…

Excerpt from Sadie’s class memoir

“What’s up,” I asked her.

My mother never speaks in a stern or harsh tone and when she does, she’s usually playing, so I didn’t think much of it when she started out with her “mom voice.”

“We need to talk about what’s happening in school.”

Again, I wasn’t worried because everything was going great. I was adjusting to middle school with no problem. Which made what she showed me on her laptop even more confusing. I leaned in to see my grades on Parent Portal, and shock was the only thing I felt, well… that and confusion. I would have been fine if it was just a C but a 16 in history and Fs in all my other subjects.

“Sadie, what’s going on?”

I had nothing to say because I didn’t know. As far as I knew, I was getting my work done and school was going great. She was so upset when she asked, “Do you think these grades reflect, or even meet the above and beyond the brown standard?” I burst into tears because I didn’t want to disappoint my family.

My voice was soft and teary when I said to my mother, “I don’t know what’s happening. I thought I was turning in all my work.” I wasn’t just saying it to get out of trouble, I truly thought I was doing and turning in my work to all my teachers. The next few weeks would be the strangest weeks of my life.

“I’m awfully sorry. I didn’t mean to frighten you.”

Here’s the most frightening part of this entire situation…Sadie really and truly thought she was doing fine in school. After meeting with her teachers and hearing them all say the same things about her behavior in class, I was as confused and scared as she was.

Apparently, she’d started “zoning” out during the class time. She wasn’t using her time to complete assignments or even participate in class discussions or activities. Not that any of her teachers had reached out to me to tell me about the change in her behavior and work habits, and that was another point of concern.

She wasn’t causing any problems for them, so rather or not she was working to her full potential didn’t matter. That bothered and angered me. We started keeping a lethargy journal, looking for patterns of sleepiness and fatigue. I suspected she may have some type of sleeping disorder because a few years earlier, I had been diagnosed with narcolepsy with cataplexy and a lot of what she was describing sound similar to what I had experienced.

There was definitely a pattern, and we finally took her to see her pediatrician to get a referral to a pediatric sleep specialist who could help us figure out what was going on with our girl.

That’s when things got really scary. She struggled to stay awake during the day and couldn’t tell me what had happened in school. She wrote about the early days before we knew what was going on.

Excerpt from Sadie’s class memoir

Over the next couple of weeks, my sleeping habits changed drastically. I went from sleeping at night to sleeping most of the day. I went to school, slept in most of my classes, came home and slept until seven or eight at night and stayed up the rest of the night and did it all over again the next day.

We’d gone to see my pediatrician, and he gave me Vyvanse, which is used to treat ADHD but also to treat narcolepsy. The idea was if it worked to keep me awake, then we knew what to tell the sleep specialist and if it didn’t work…back to not knowing.

The first semester of my sixth grade ended on January 21, 2017, and that’s the last day I would attend a brick and mortar school. January 22, 2017, I went to sleep at 5:00 a.m. and didn’t wake up until my older sister was coming home from school at a little after 2:45 pm. I had slept the entire day and had missed my first day of PE. I was really looking forward to taking that class, too.

“You must have been really tired, Sadie, to sleep all day. I tried to wake you up and you didn’t even budge,” My mother said to me.

“Yeah.”

I didn’t know what else to say. I hoped it was just a one-time thing, but the next day it happened again and then again the next day; until it had been a couple of weeks since I’d been in school.

“Now, come have a nice cup of tea, dear. I’m sure it’ll work out somehow.”

January 22, 2017. I have mixed feelings about that date. In so many ways, it feels like the day I lost my baby girl. The day everything I knew and loved about her was taken away. I know, it sounds so melodramatic, but the reality is she was never the same after that day. And she will never be the same again.

We realized she didn’t have narcolepsy, the medication did nothing for her at all. Well, it did manage to get her high. We immediately stopped taking it. I took her to my sleep specialist, who is not a pediatric neurological sleep specialist, but he agreed to see her because we couldn’t find one in one in Columbia or Charleston.

At first, he thought maybe she had delayed phase sleep disorder, a circadian rhythm disorder where a person’s sleep/wake cycle is later than what is socially normal. So, say she would go to bed at 5 am and wake up at 3 pm. DPSD is treated by pushing the sleep/wake cycle back to normal time and using melatonin and blue light therapy to anchor the patient to that time.

We thought we had found the answer, but as Sadie noted in her memoir, we just found more questions.

Excerpt from Sadie’s class memoir

After so many months of staying up at night alone, looking at Netflix, eating anything I wanted, and hanging out with my guinea pigs and my dog, I started to get lonely. I missed my friends and I hardly went out anymore.

Then things started to get really bad. I started having hallucinations, which was really scary because I thought I was actually going crazy. I remember asking my mother about them and what she told me to put me at ease, somewhat.

“Mother, I’m seeing things. Things I know aren’t there, but they still scare me.” I didn’t look at her, I was kind of embarrassed about it, honestly.

“Things like what?” She asked. She didn’t sound like she thought I was losing my mind, but she did sound interested and a little concerned.

“Things like blood on the walls and a tall, shadowy figure sitting on the couch.” I did look at her then, she was just nodding her head and listening. She could’ve been a counselor.

“Okay. Those sound like hypnagogic hallucinations.” She said this like it made all the sense in the world. And like it was normal to have them.

“Oh come now, Prince Phillip. Why so melancholy?”

We got through her first year of middle school with the help of a great Assistant Principal and a wonderful homebound teacher. Both were so helpful. Sadie was able to go back to school on a modified schedule for the last two weeks of her sixth-grade year and reconnect with the friends she’d made. I was so happy for her. She’d been so isolated and lonely over the past sixteen weeks.

The summer proved to bring even more confusing changes, not only to her sleeping patterns but at times she seemed to be a completely different girl from the one we thought we knew. She had grown roughly three inches in the time since she’d been home from school. Apparently, being allowed to sleep on her body’s natural rhythm allowed her to catch up on her growth.

One day I went into Sadie’s room to check in on her because it was late and she hadn’t gotten up. She had started sleeping upwards of 10 to 18 hours a day. Nothing could wake her up. When she wasn’t asleep, she still wasn’t quite awake either. It was like someone else was in control of her body and Sadie was nowhere to be found.

That Sadie didn’t walk like my girl. She was more baby-like; whining and having tantrums when she didn’t get what she wanted. She would eat anything she could get her hands on when she woke from her long sleep. Whenever any of us tried to engage her in conversation, she would either grunt or not respond at all. I missed talking and laughing with her.

And her eyes. That’s what broke my heart and almost broke my spirit. Her eyes were like two flat discs of coal. Sadie has the most expressive, brightest eyes I’ve ever seen; they shine like chocolate diamonds. But when she would sleep for upwards of eighteen hours a day, she just wasn’t herself.

One of the biggest reasons people suffer from depression is loneliness. I’d not realized this until…Until is such a small word, but everything that comes after it usually has the largest effects on our lives. Just an observation.

Anyway, I didn’t know this until Sadie fell into a serious depression which led to so much more than sleeping and personality changes.

I continued to document everything I could because we were headed to Atlanta, GA to see the pediatric neurological sleep specialist and get the answers we needed. By the time we were on the road, I was sort of at my wit’s end. I’m the only one she feels comfortable talking to about what’s happening with her, and that means I’m the only one she comes to when her depression gets really bad.

She confessed she had been self-harming after I confronted her about it and honestly, I didn’t know if I had what it took to keep my baby alive long enough to get the help we needed.

Excerpt from Sadie’s class memoir

While waiting to see the specialist, I resorted to self-harm and in an attempt to convince myself it wouldn’t hurt when I decided I was ready to end my life. However, I found myself liking the euphoria it gave me and the sense of being in control. So, I continued every day until I realized what I was doing to myself and feared what would happen if someone were to find out.

I should’ve known someone would find out. My mother is very attentive and knew some serious changes had taken place with me and pulled me into her room for a talk. I’m glad she did because she may have saved my life.

“Sadie, you want to talk about that?” She nodded toward my left wrist, which was covered with a long-sleeved shirt at the time. I didn’t know that she knew about it.

“I don’t want you to be disappointed in me,” I answered back. I didn’t look up, I couldn’t.

“Be disappointed in you? Why would I be disappointed in you?” She really did sound confused. I looked up at her, and she looked so scared. Not disappointed or angry, just really scared. I’ll never forget that look on her face.

“Because I was always your ‘born-leader’. And now, I’m not. This makes me feel weak.” Tears gathered in my eyes as I waited for her to tell me how weak I am for doing this to myself.

“There is nothing weak about you, Sadie. You’re one of the strongest girls I know. I don’t know if I would be able to handle what you’re going through when I was your age. You keep pushing through and trying. Fighting. You’re not weak, baby. You’re a warrior. Just like me. We fight. Sometimes we fall. But we get back up.”

“I don’t want to worry everyone.” I’m crying hard, now. My mother doesn’t reach out to touch me, because she knows I don’t like that. She respects my boundaries.

“You are a part of a whole family. A family who loves you and wants to be here for you. You can talk to any of us. At any time. Day or night. You are not alone, Sadie. Ever.”

I didn’t know how much I needed to hear those words, but she did.

“And from this slumber, you shall wake, when true love’s kiss, the spell shall break.”

It had been a long wait, and one we were glad was finally over. Sitting in the examining room in an office across from Emory University where one of the premier doctors specializing in what Sadie had been diagnosed with did not really put my mind at ease, but it did confirm my own suspicions.

My daughter, Sadie has Klein Levins Syndrome; AKA Sleeping Beauty Syndrome.

KLS is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world where the patient becomes progressively drowsy and sleeps for most of the day and night, sometimes waking only to eat or use the bathroom.

~KLS Foundation

She was also diagnosed with Sighted Non-24; AKA Free-running Circadian Rhythm Disorder.

N24 is a circadian rhythm sleep disorder in which an individual’s biological clock fails to synchronize to a 24-hour day. Instead of sleeping at roughly the same time every day, someone with N24 will typically find their sleep time gradually delaying by minutes to hours every day… N24 occurs in 55-70% of completely blind people but also occurs in an unknown number of sighted people.

~National Organization for Rare Diseases

It would appear my darling girl has not one, but two of the rarest sleep disorders in the world.

At age eleven, she was charged with dealing with the isolating effects of N24 and the debilitating reality of losing days and weeks at a time due to Klein Levins Syndrome. Sadie is not your typical 13-year-old girl, but that doesn’t mean she doesn’t have the same needs and wants as every other 13-year-old girl out there.

We’ve been going to school online for the last two years, and she desperately wants to attend a brick and mortar high school. I don’t know how I’m going to make it work for her, but where there’s a will, there’s a way.

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There is no Prince Charming. No true love’s first kiss. We are not living in a fairy tale.

My daughter has Klein Levins Syndrome and Sighted N24 and we are learning every day how to manage, live, cope, and survive. Hopefully, researchers will find that magical kiss to cure Sleepy Beauty Syndrom, until then… We learn how to thrive.

Excerpt from Sadie’s class memoir

It was great to have a diagnosis and a way to manage my circadian clock, but I was still dealing with depression and thoughts of self-harm. I kept most of my feelings to myself. I didn’t want to give my family more to worry about because of me.

I continued to feel completely alone like I couldn’t talk to anyone and that no one could ever understand what it was like to never know how it feels to go to sleep wondering if it would be the next day or the next month when they awoke. This was the darkest, emptiest feeling of all.

I knew my family could tell a difference in me but I was too sad to care. I couldn’t get rid of that empty feeling like something was missing and without realizing it, every day became a fake smile. I found it hard to find anything to make me happy.

After that, I started seeing a counselor. Things are finally looking up in the case of my mental health, but it is still very hard for me to talk with my family. Some days are better than others. I still struggle with depression and health in general, but I know how to reach out for help.

When I look back over the past two and a half years, I wish I’d realized that I wasn’t alone and could talk to my family; that it was okay to reach out for help. My mother always says there are no mistakes, just opportunities to learn and grow. So, I don’t regret my choices, but I wouldn’t mind some easier lessons and maybe a little less growth.

“Brierly, if we fight without hope, we’re defeated before we start.”
― Sarah E. Morin, Waking Beauty

If you are interested in finding out more about either of these disorders, please click the intext links.  Thank you for allowing me to share our family’s story.

Are you or someone you know affected by a sleep disorder?  If so, I’ love to hear from you.

Life is a journey, just because you wander doesn’t mean you’re lost.

*All headings are quotes from Disney’s Sleeping Beauty.

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Vickey Finkley-Brown
Vickey Finkley-Brown was born and raised in the Lower Richland area of Columbia, SC. She attended Lower Richland High school, where she met and fell in love with her high school sweetheart in 1992. They’ve been married for 20 years and have three beautiful daughters; Kay (18), Sonne (15), and Sadie (13), one quirky dog (Sammy 11), and ten… yes, count them—ten guinea pigs! Vickey graduated from The University of South Carolina with a BA in English and went on to earn a M.Ed. in Curriculum Design and Instruction from Lesley University, which enhanced her 13-year high school teaching career. After developing systemic lupus erythematosus and narcolepsy w/cataplexy, she and her husband decided it was time for her to come home and learn how to live as healthy as possible with the new reality their family was now facing. It turned out to be a blessing, because a few years later, her youngest daughter developed two of the rarest neurological sleeping disorders in the world (Klein Levins Syndrome- a.k.a. Sleeping Beauty Disease and Sighted Non-24). Not only is Vickey able to be at home with her daughter while she attends South Carolina Virtual Charter School and when she goes into KLS episodes, she is also free to pursue her passion as a romance writer, podcaster, and blogger under the pen name; Ella Shawn. Her enchanted platform is an extension of her philosophy of living, loving, and evolving. She writes to gain understanding of the hard choices women often have to make. She endeavors to create enchanted spaces in which to disrobe and see the whole of who she is, and who she isn’t. Vickey shares her journey of self-discovery through writing romance novels, on her podcast, and in her blog. She loves connecting with women who enjoy seeing glimpses of their truth wrapped in sexy happily-ever-after’s. Vickey uses her platform to encourage women to reconnect with their true and essential selves. To cultivate and nurture spaces where they cease being simply women of flesh and bone and become Enchanted Beasts. When she’s not being Ella Shawn, or learning coach, or caregiver, or being taken care of… You may find her painting, crocheting, meditating, or sweating it out in a hot yoga class. But she’s a wild and free spirit who would be just as happy living in a converted van and tooling around the country—sleeping where she runs out of gas. Landing wherever she lands and meeting whoever she meets. However; she’s pretty sure her husband and children wouldn’t be willing to pack up and hit the road with her and, anyway—where would all the piggies go? So, she indulges her nomadic, bohemian spirit with planned travel, mother-cation weekends, and her ever-growing imagination.

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