By the time I wake, my husband David has been up for a couple of hours. He's already showered, and is working. This morning he's drafting a memo for an international human rights organization. It's fortunate David's able to work from home many mornings, because mornings--our daughter Awesome's most seizure prone time of day--can be very rough around here.
As he works, David listens for the first indications that Awesome's awake. Once she wakes, he'll spring into action, helping set in motion our choreographed morning routine. In this our morning dance, there's a reason for the way we do almost everything. Our routine is deliberate, disciplined, and exacting.
These days I spend a lot of time worrying about the line between reasonable and unreasonable. Between normal and abnormal. I think a lot about whether Awesome is really a normal child with epilepsy. Or whether she's a child precariously balanced on the edge of a scary precipice and whether the whole normal thing is really an illusion. I want desperately to believe that she is that normal child who just happens to have epilepsy. And not the child balanced precariously on the precipice before the inevitable fall. We work hard to keep that fall from happening.
Awesome's being able to remain stable over the long term--and not to end up in an acute crisis situation that could quickly deteriorate into a serious health-threatening and life-threatening situation--is almost entirely dependent on our ability to adjust the little things of her life--environment, routine, and diet--so as to keep her stable. In intractable, drug-resistant epilepsy the particulars of life, the environment, routines, and diet are not neutral. They can determine whether a child will remain stable or be swept up in an acute crisis. And an acute crisis is like a swiftly flowing stream. Once you enter it, it's not always possible to control where you end up. One thing leads to another which leads to another which leads to another and often, before you know it, you are in serious danger. We've been there. It's a scary place to be. We've also watched others go there and end up in the undertow, in the rip tides, in the undercurrents that pull their child under and away, until rescue is very difficult--and not always successful. And so we work diligently in the little things of life, to reduce the likelihood that Awesome will end up there, caught up in the strong currents.
As soon as the sleep's gone from my eyes, I slide out of bed, pad softly across the bedroom (so as not to wake Awesome), find the bag containing Awesome's rescue medication--it's always hung on the door handle overnight so we know exactly where it is--and slip it over my head. I'll wear Awesome's rescue medicine bag all day long. It will come off only for the short time that I'm showering or getting dressed. And if another family member assumes responsibility for her care--and some ONE person is always in charge of Awesome so there are no mix ups ("I don't have her, I thought YOU were watching her!")--I will hand the rescue med bag to that person--to wear on his person (not to put down somewhere and lose track of), Having Awesome's rescue medication very close at hand at all times is very important because Awesome has a very strong history of status epilepticus--seizures that don't end without medical intervention. Having rescue drugs close at hand could be the difference between keeping Awesome on the shore or risking having her get caught up in that swiftly flowing current of an acute crisis that could quickly get out of hand.
But for now, Awesome's still sleeping soundly. Unlike most school aged children, Awesome--who has intractable (drug-resistant) epilepsy-- doesn't have a set wake-up time. Rather, she sleeps until she wakes own her own. Through experience we've learned that waking Awesome (instead of letting her wake on her own) triggers increased little seizures and also greatly increases the likelihood that she'll have a convulsive seizure. And since having a convulsive seizure usually short-circuits the entire morning, (before CBD, it used to short circuit the entire rest of the day), there's really nothing helpful to be gained by waking Awesome instead of letting her wake on her own.
Homeschool really makes a better, more stable life possible for Awesome. If she were in public or private school and had to be up and out the door to be at school at 8 AM, I believe we'd quickly find ourselves in a crisis situation. Being woken early (instead of waking on her own) would cause more seizures--big seizures, absence-like seizures, and subclinical seizures. The increase in big seizures would undoubtedly cause Awesome to miss a lot of school (she'd just not make it there many mornings or have to leave school again if she did). Likewise, the increase in little absence-like and subclinical seizures would have the secondary effect of making learning much, much more difficult. Short absence-like seizures impact learning because they randomly interrupt both attention and processing. It's difficult to learn when your brain is randomly checking out for 1-7 seconds at a time every few minutes.
And those secondary learning problems, lead to additional stress; additional stress in turn to more seizures until things begin escalating. The stress trigger/seizure escalation process can be like a snowball rolling down a hill gathering weight and momentum and speed. Seizures lead to secondary stress; secondary stress triggers more seizures; more seizures lead to more secondary stress; which leads to more seizures.....and on and on and on it goes. You are quickly inching your way out from the safety of the shore into the swiftly flowing stream and before you know it, you're in danger of being swept along by something with too much momentum. Wresting back control becomes harder and harder. It's not far-fetched to imagine that we'd quickly come to a crisis point--not just in terms of school attendance and learning-- but also in terms of epilepsy severity. We just simply do not want to go there, if at all possible
In fact, as crazy as it sounds, without homeschooling, life as we know it right now with Awesome, would be difficult, if not impossible. We'd be in a much worse place both in terms of learning and in terms of epilepsy severity. Homeschooling gives us flexibility in so many ways. Flexibility to let Awesome sleep until she wakes and so keep seizure counts lower. Flexibility to start and end school days later. To give Awesome hours or a day to recover when she's just had a big seizure. To work ahead on good days so that when bad days come, we're not behind. To pause and respectfully wait for a little seizure to end, and then to repeat what she just missed because she lost consciousness. In short, we have the flexibility to accommodate the unpredictability that is intractable epilepsy.
But back again to our typical day...
Awesome usually wakes sometime between 8:30 and 10:30. How late she sleeps is a function of the impact of her current kind and dose of seizure medication, how much trouble she had falling asleep the night before, how well she slept during the night, and unfortunately, also how reactive her brain has been lately. We've noticed that what time Awesome wakes is a kind of a measure of how well she's doing. When she wakes earlier and refreshed, it's a good sign. When she sleeps longer (up into the 10-11 hr. range) and is groggy on waking, it's a very bad sign.
Seizure hypervigilance starts early each day. As soon as I wake, in fact, because morning is Awesome's most seizure prone time. I stay in the room--or the adjoining bathroom (with the door open between the rooms so as to listen for sounds of a seizure)--until after Awesome wakes.
If Awesome still hasn't woken by the time I return from the bathroom, I find my computer and lie on the bed beside her until she wakes. Immediately after she wakes, before she gets out of bed, I give hand her the oral syringe with her morning dose of CBD. She chases it with a swig of orange juice that David has left on the nightstand in a very small covered plastic container. I take note of the time and alert David that Awesome's awake. He puts on the tea kettle and sets the kitchen timer for half an hour.
I follow Awesome into the bathroom. It's awkward, but because at least a third of Awesome's seizures occur in the bathroom right after she wakes, and we've found that having me be in the next room lying on the bed results in delayed seizure response--with Awesome falling over onto the bathroom, or hitting her head on the counter, or falling flat on her face on the hard tile--all dangerous things--we've just given up, and Awesome has had to give up her privacy in the morning. She's OK with that. I sit on the counter surrounding the over-sized bathtub, and try to stay alert so I can on a second or two's notice, rescue her on from falling, while at the same time trying to give her as much space as possible. Awesome usually wakes up slowly, and we can be in the bathroom for awhile. David knocks on the door and I crack the door open enough so that he can hand us metal containers with lids--one with milk tea for Awesome (because the sooner she gets calories and protein in the morning the better) and one with water for Awesome. We learned our lesson last Christmas when it came to using breakable glasses. Awesome is not allowed to have breakable drinking cups anywhere but the kitchen table. We've also found the hard way that cups with lids are the way to go. And so she (and we) use only Contigo vacuum seal stainless steel coffee mugs for any drinks in the house.
As soon as Awesome is done in the bathroom, she takes her morning medicine and supplements, each one carefully chosen and dosed after careful research and experimentation. Each one valuable for a different reason. CBD and supplements have to be given at least half an hour apart.
Awesome then does her morning chores of feeding and watering our dogs, Belle and Coco, and cat, Marble. But because she's still in seizure-prone mode, having just woken, she can't do this alone. She is shadowed--sometimes closer and sometimes at a distance to give her dignity--by David. She loves giving her much loved dogs (she is a dog person!) their morning treats and loving on them. And then she sits and loves on her cat for a few minutes on the front porch with David with her. After that she gets dressed or showers.
Showering is a whole thing in and of itself. We've already dealt with three shower seizures, so Awesome and I tag team showers. She goes first and I sit in the bathroom while she showers. I can't see her behind the shower curtain and so our rule is that she has to sing in the shower. A singing Awesome is a conscious, non-seizing Awesome. When she stops singing or talking, especially mid sentence, lyric, or word, I check on her. Sometimes we put music on and we both sing to it. Sometimes she--or she and I--sing a capella together or we take turns, each singing a line of lyrics. Sometimes she doesn't feel like singing and so we talk instead. One morning during talking while she was in the shower, she failed to answer and then failed to answer my query if she were OK. And I opened the shower curtain to find that she wasn't OK. Thankfully, I got her out of the shower and safely to the floor before the convulsive seizure's full weight hit. When Awesome has a morning seizure, it usually derails the morning. Before CBD, a morning seizure used to derail the whole day. She'd sleep deeply for up to an hour, and then wake with serious impairments. Often she'd be unable to speak for an hour, and her ability to speak normally would take another hour or two to fully return. The other parts of her brain that had been affected would also cause issues. And then she'd be so totally fatigued and have such a serious headache that the day was a loss. Since CBD, Awesome usually sleeps half an hour or less, and then her post-ictal (post seizure) impairments are mild and short-lived (minutes instead of hours) or she has no impairments at all. Usually she's ready to rock and roll again in a couple of hours, and often she's game for the rest of the day's regularly scheduled events--school and extra curricular activities.
Most mornings, she does NOT have a major seizures and so, after she's done showering, I shower. We chat while she dresses and then David takes over her care--she or he has to confirm that she's in his care; we can't assume. David has gotten her breakfast in the meantime. Before CBD, breakfast was a major big deal affair because Awesome's ability to function in the morning without constant seizures depended on having a big, high protein breakfast. Since CBD, her ability to maintain steady, normal energy levels has improved. And so, because Awesome has decided that eating is a chore that she'd like to avoid if possible--breakfast is a hard sell. These days it's often fruit and yogurt.
Awesome eats while David starts her geography and history lessons. David teaches from primary source material, from non-fiction books, historical fiction, from maps, etc. and there is a lot of discussion, interaction, and back and forth. Awesome truly wakes up during this period of time. When I emerge from the bathroom, the sound of the their lively discussion is loud and often raucous. Awesome is full of opinions. They then go on to Bible. Awesome prefers to do the reading out loud and tends to give her own commentary. She's explained to me her own rendition of the Exodus story this week which involves the children of Israel constantly blaming Moses for everything. She felt really sorry for Moses until the bit about him getting mad at the Israelites and then commanding them to murder each other as punishment. Now she hates Moses and considers him a mass murderer. She explains that kids' Bibles are dumbed down and that she prefers the adult version which is, in her opinion, wild and interesting, if sometimes disturbing.
As father and daughter read and discuss, I get myself together, straighten the house, load the dishwasher, and start the laundry--or depending on the day, work on supper prep or cooking. By the time I'm ready to sit down with Awesome, she's reading her history assignment for the day. Right now she's reading the Odyssey, having just finished the Iliad earlier this week. She loves these books and keeps telling me to wait til she reads just a little more. I finally insist that she read more on her own time--it's time to start English. Before we start English, David, Awesome, and I discuss lunch plans and decide what we'll do for lunch that day. Eat leftovers, make something quick, pick something up, or get out of the house for a quick lunch. Awesome does best if she has a lunch with a lot of protein--preferably meat. If she doesn't get enough protein and calories, she is prone to more seizures and an energy deficit in the afternoon. The difference since CBD is that it isn't an energy crisis and a boatload of seizures. If we've decided on picking something up, David heads out to do the pick-up while Awesome and I start English.
We use a rigorous traditional English grammar and writing text. We do most of the lesson orally and the only writing out I ask Awesome is sentence diagramming and essays (the latter on a word processor). We do an oral review of previous lessons' content (in the form of questions I ask Awesome). Awesome then reads the current lesson out loud, and we do every single question in every single exercise--Class practice and Written Exercises--orally. As needed, I correct and explain as we go. Awesome finds English grammar and even sentence diagramming, very easy. She aces most of English, though she groans about diagramming, and currently hates the writing assignments--which is odd because she is an excellent writer. She just doesn't like to write things SHE doesn't want to write. But we're working on that since she doesn't really have a choice. 7th grade includes a lot of writing assignments and to her consternation, I have even more writing assignments planned than are outlined in the English textbook.
As soon as we're finished with English, it's lunchtime (and lunchtime meds time too). All throughout the morning, David and I have been noting Awesome's little seizures with tally marks in a notebook I keep for that purpose. Some mornings we'll see just 1 or 2. Most mornings we'll see 3-5. On worse days we'll see 7-9. And on really bad mornings we'll see 10 or more. We worry most on mornings when we see none, because that can bode badly for the possibility of a big seizure on the horizon in the next day or two.
After lunch, as David heads off to the university to teach classes, Awesome and I set up at a table in the schoolroom for Algebra. I'm a stickler for math, and I have a rigorous program that I've devised and have followed with our older kids that ends with them completing College Calculus at our local liberal arts college by the end of high school as well as having a basic knowledge of mathematical modeling and computer coding, both achieved through learning C++ computer programming language through EPGY (Educational Program for Gifted Youth) through Stanford University. I know, it's crazy high achieving, but hey, it's worked for our sons and even propelled one of them--who had always loved math--into engineering. He's now a very successful, sought-after firmware engineer. What all that means for Awesome is that she and I are working our way through a really well-thought out Algebra textbook together this year. She and I sit side by side and both individually work out every problem; we check our answers against each other, find the mistakes together, discuss it all, and correct mistakes as we go. Awesome is doing well--she aced her last test with a 98%--and, believe it or not, we're having fun with Algebra (though she would never admit she likes Algebra, I think she does). I allow Awesome to play her favorite Spotify playlists during Algebra whenever we get to a stretch where we are working several problems in a row and there's no need to discuss anything for several minutes.
One day a week, right after lunch, instead of heading to the schoolroom for math, we instead head out to the public library for Awesome's Writing Group. It's a group of 5-6 homeschooling students ranging in age from 12 to 16, who all love to write, discuss writing, do writing exercises, and share their writing with each other. Awesome's been a part of the group for a year and a half and she loves this group; they enjoy each other's company. On the one day a week that her Writing Group meets, we hurry home from the library and dive right into Algebra. We try hard to still get through all her schoolwork before swimming. If we don't, we try to make up what we didn't finish, the next day.
As far as Awesome being a writer, she's actually a very talented one. She has a following of over 400 readers on Google+ where she posts daily installments (actually she's taking a creative hiatus right now) of her fantasy fiction stories to a loyal readership--a readership that includes those who offer to illustrate some of them. Pretty impressive for a 12 year old, huh? Awesome has grown up with older, very creative brothers (5 of them, no less) who were busy filming stop motion films, writing songs, playing music, writing stories and poetry, drawing and painting, creating computer programs and inventing, and frankly ALWAYS doing something creative. With her brothers always involved in something creative (and still involved in something creative), it was almost inevitable that Awesome would find her own creative outlets at a young age. After watching her brothers spend a couple of summers writing, filming, editing, and voicing a stop motion film, Awesome herself conceived, shot, and directed her first stop motion movie--"Hello Kitty and the Death Skunk" at the tender age of 5--and entered it in a kids' film festival competition; she even got an award or two for it.
After Algebra, we move back to the couch for science. Awesome hates science because the textbook is badly written. We'd already ditched the first textbook of the year for the same reason. So we're simply going to stick with this one and struggle through. Awesome does a lot of complaining about the textbook. But we're still learning how to decipher and understand a text and make the best of it, even when it leaves out information, and was clearly written by a geek who can't introduce ideas and drops random facts in and then expects you to remember things that seem incidental. We supplement with Google, online videos, and with more interesting books. We struggle through, taking turns reading, complaining, and discussing. Some chapters are better than others. By the time we're through Science, I'm sleepy and Awesome's tired and restless. We take a break. Sometimes we exercise by walking a certain number of steps, or by racing around the house until we get silly; sometimes we dance; sometimes we visit with our dogs. Sometimes I just let Awesome do as she likes for 10 minutes. Usually she gravitates to a comic book. Because of her intractable epilepsy and the possibility of a seizure at any time, I can't leave her alone in a room by herself without having her on video or calling out to her every minute or two. Often, I ask Awesome to eat a snack at this point in the day. She says eating is a chore. Often she'll agree to drink a smoothie. I make it while she sits nearby. Or I call out to her and check on her every two minutes.
At this point it's usually around 3 something. I give Awesome her afternoon syringe of CBD. She washes it down with a swig of orange juice or the smoothie I've just made.
With smoothies in hand, we set up for our last subject of the day: visual/spatial skills and art. It's recommended that kids with epilepsy--especially kids with intractable epilepsy--undergo neuropsychological testing to both establish a baseline, and then check for cognitive decline over time due to seizures, damage from seizures, and effects of medication. When Awesome went through neuropsychological testing this past spring to establish a baseline, it was noted that she showed issues with visual processing and spatial skills. And so, we've been working on strengthening those skills. We spend half an hour on spatial analysis skills (we do all the activities working side by side, each with our own set of blocks or whatever--so we can both race each other and also correct each other) using games like Q-bitz, Color Coding, Keva puzzle cards, etc. For the second half an hour, we are reading through, learning from, and doing the exercises in Drawing on the Right Side of the Brain. Awesome has gone from having a hard time with some of these things to really doing well at them. It will be interesting to see if her spatial and visual processing scores improve whenever she has retesting with the neuropsychologist.
We usually finish schoolwork with very little to no time to spare before Awesome has to start getting ready for her after school extracurricular activities--which start at 5 PM. Four days a week, that's swim team. One day a week that's Theater class. Awesome absolutely loves her theater class. The kids in it are all free spirits who march to their own drummer, as she does. In that respect, she's found her tribe. She's learning to like swimming... We'd hoped swimming would be her main social function and where she'd find a ready peer group, as her brothers had, but alas, the swim team we once knew is no more. A new hard-driving head coach--more appropriate for a college team than one composed of high school, middle school, and elementary-aged kids, literally decimated--through unreasonable practices--our sons' beloved swim team the year after Awesome's youngest brother left for college. The team went from several hundred swimmers (300-400) down to maybe 50 swimmers; it also lost its practice facility. The team that is left is a shadow of the team that our sons knew and loved--the team that provided them with not only adult coaches who were amazing mentors, but also with a large peer group. Awesome is most often one of only two to four kids in her group--not even the same kids consistently week to week. When it comes to extra-curricular classes I can't simply drop Awesome off. I have to stay there nearby, watching Awesome, ever diligent for seizures. At Theater, I watch through the two way mirror, from the observation room. At swimming, I have special permission to be on the pool deck (where no parents are usually allowed), watching Awesome every minute for signs of a seizure--in case she needs rescued. By the time Awesome finishes with theater or swimming it usually 6:15, and she's usually fairly exhausted.
We head home. I cook or we eat food I've prepared and frozen in individual servings. Awesome, meanwhile, just wants to be left alone to think her own thoughts and to lose herself in her comic books, by watching cartoons on the computer, playing, or drawing quietly. She can't be unsupervised in a room by herself, so we have ways of keeping her under video supervision while I have to be in a different room. Awesome enjoys the time by herself even if we have to watch her on video.
Often Awesome is so hungry by the time we get home from swimming, that she's too hungry to wait for Dad to get home from work; she often eats right away. Awesome will spend the rest of the evening depressurizing from the day and relaxing--as do we. After cleaning up from supper, David and I usually watch a program on Netflix--and I'll double task by folding laundry or doing meal prep for the next day while we do so.
As it gets towards bedtime, I'll take Awesome her last dose of CBD for the day. She gets ready for bed while David fixes her milk tea. He thinks it helps her get through the night energy wise. I stay with Awesome as she gets ready for bed because, again, she can't be alone in a room without a video camera and its not a time for video cameras.
Half an hour after her CBD, Awesome takes her last medicine and supplements for the day--including melatonin. She reads me her Empatica Mate statistics for the previous night. I record them. I also chart all her seizures. I've been quietly keeping count all day long. We pray together. We spend some time talking. And then she works on being quiet and going to sleep. It can take her an hour to fall asleep. How quickly she's able to fall asleep seems to be a function of how well she's doing. Sleep is not an easy thing for Awesome, as it's not an easy thing for many kids with epilepsy. When Awesome finally falls asleep, she usually sleeps deeply. Even in her sleep I monitor her for big seizures, even as I sleep. Because with a very strong history of status epilepticus, an unnoticed seizure at night could be very serious and health- or even life-threatening.
Because I've been "on call" pretty much all day-- from the time I woke up in the morning until the time Awesome went to sleep at bedtime--I really need some "down time" before I can go to sleep. I need some time when I can decide what I do with my time. When I can think my own thoughts. When I can write about this crazy life we live. When I can breathe and not be quite as hypervigilant for a while, even if I have to do it lying on the bed beside Awesome. And so, I tend to stay up after Awesome--and even my husband David--goes to sleep. I write. I reflect. I exist. I calm down and wait to get sleepy.
This account of our day barely scratches the surface of what it's like to live a school day with a child with intractable epilepsy. One who is homeschooling to give her a better chance at life. What it's like to live with the special problems. The responsibilities. The worries. The hypervigilance. The things that are perfectly normal. And the things that are anything but normal. The days that are vulnerable because a seizure can strike without warning anytime day or night. And the way living with that reality changes the way your live. And the way you are always at the ready to give critical seizure first aid. And the days that are still amazing as we watch Awesome learn and grow and blossom into who she is in spite of epilepsy. All the little things we do to buy Awesome the space to exist as a relatively normal child, a child not caught up in an acute seizure crisis. The ability to stay close to the shore. The ability to not get caught up in the wild currents of intractable epilepsy that threaten to pull her away and under the swiftly moving water where her life would become about surviving instead of learning and becoming.