The Dark Truth

I can’t always explain how, but I know if something is true. I feel it, and those feelings help me live with ease and openness of heart. When I know something is true, I feel less afraid and I don’t try to control actions outside my behavior as much as I do otherwise. It feels like I’m not lost and alone on an endless lake just trying not to drown when I live in truth.

Truth is my buoy. I have lived my whole life working toward being open and honest with myself and others. The only rule we did not break growing up was the “be honest” rule. I am vigilant in awareness and welcome all input that will lead me to the truth. I survive to live in truth.

Or do I?

I think I might be a liar.

‘You know what’s wrong with the truth? It’s fricken hard. ’You know what’s wrong with trying to find a truth that works for everyone? It doesn’t exist. ‘You know what’s wrong with bringing only light to the world in the name of honesty? It’s pretty much a lie.

We want to be happy, so we search for the truth. Or, we want to be happy and do everything in our power to avoid the truth. And no matter how our psyches and societies try to convince us otherwise, we usually think we are doing it right. But there is no one way to be happy any more than there is one truth, at least not one we are all ready to know. And I am no different.

Depending on how you chose to see the world, as it throws you recklessly against its limitations we, at some point, have to shit or get off the pot and decide on a working truth. I choose to be connected and to believe in the constructs of law, the biological need for community, and the accepted limits of right and wrong. I choose to live toward compassion and communication rather than aggression and war. For me, the animal impulse to move forward in spite of fear and failure is just as true as my desire to heal and fix, the need for touch and console. Those choices are just as true as my grave knowing that the moments I feel most pure and divine are in moments of love. I live for love and truth.

But, like life, the truth is messy and hard to purely articulate. And often times, it is elusive. I desperately want to know why. Why is my son sick? Why are we collectively cruel to one another? Why are we so primitive that we feel it easier to push love away rather than welcome it? Why can’t I relish the moments of gratitude every second of every day instead of hiding behind fear? Why don’t I lose my shit more often, it feels like I’m given ample opportunity? Why am I so weird?

I am not usually this heady or maudlin, but here I am. I guess I am bordering on teenage existential bullshit, but It’s because today, for the first time maybe ever, my rage escaped… and it felt fan-fricken-tastic. And now I’m questioning some important ideals I thought up to this point were entirely true.

(Don’t worry, I didn’t hurt anyone emotionally or physically.)  Image result for smiley emoji

Today I settled into a deeper part of myself, a part of myself that feels giddy with confidence because the shield of goodness I wear around my grossness cracked open. Something old and raw surfaced in me today, and it was…affecting.

I never doubted that the world is full of magical beauty and goodness, of miraculous, lighted spirit. But along with the light, the world is dark with hate, indelicate stupidity, and ridiculous greed. The world is full of ugliness I never admitted was real because I never could admit that I held a piece of that ugliness in me too.

But today, I saw myself in a whole new light, and I loved it. I wasn’t ashamed and I wasn’t scared. I am empowered! Today, I have the courage and confidence to sit with the truth that darkness is not the opposite of light, as I knew it to be just yesterday, but it’s own ugly truth.

I think people are capable of so much more than we think we deserve; and every idea I have, every breath I am gifted, every action I take centers around the impulse to heal pain with love. But I am not living up to my full potential if I hide rage and confusion behind purpose and healing, and only justify meanness and wrongdoing with compassion. It’s not the worst trait a person could have, but it is a half lie.  Because I am also disgusted. I am hurt and scared, and I am pissed!

But, all of a sudden, that doesn’t bother me because, all of a sudden I see evil in the world not as a journey to salvation unmet, but as a pure fact. Or, I see that it can be both. Like the sun on a lake reflecting sparkled ripples or hiding in shadows, the darkness is not in spite of the light but with it. They stand alone as much as they are dependent on the other. Today I am equal parts rage and love. Today is real because today I want to hurt and heal. I won’t, but I want to. And for the first time in such a very long time, if ever, I feel whole.

I am not afraid the shadows will consume me or turn me bad. I am not scared of my failings or my darkness. They are mine as much as my profound love and belief in the magic of it all. I am not granulated throughout the centuries and universes as I wish I were and I love it! I don’t have to be what I am not, because I opened the door to raw, raging anger and the feelings of injustice and pain. I am here at this moment with a new truth, a truth where the light and the dark are not concerned with their maker, only with being seen. And, I see them each. I have space for them both.

At too young an age and not deserving of it, I was shown shame and blame. I knew myself to be bad because I was not good enough to deserve love from many whose only job it was to love me. In primal need to control my failings, I buried dark feelings. I went on to try to save everyone, not just my family, not only myself but everyone. I neglected my true anger and fear, my desire to burn all the ugliness down to ashes. I wanted to be reborn without surviving the fire. That was my truth. A truth I believed unchangeable. (At least not until  I was good enough, perfect enough, and selfless enough. I’m still waiting for that to happen!)

And so the fire raged hotter and darker in me every year, hidden under my “goodness” until it finally began to destroy me. The drinking, the dreams, and the pretending was all an act to stop the truth that pain and rage aren’t handed out only to the weak, but to everyone. Today I learned that the darkness is real.
I hated the darkness in me. I wanted to be only light, not the weak, unworthy thing I knew myself to be. But, I wasn’t weak, and I wasn’t wrong. I was just never allowed to be dark and angry. I wasn’t allowed the scary feelings that were raging around inside my little redhead for fear of becoming them.

Today, the valve opened, and I was ready to feel something new. I took a good look at that dark truth, and I saw the lie. Even in my darkest nights, I denied the dark. It wasn’t until I realized that I could have darkness in me without becoming evil that I finally begin to surrender. I stopped pretending I was only good.

“…if we don’t learn to honour our aggressive emotions with equally aggressive action, we will most likely fall ill in mind and body.” 

-Dr. Nick Baylis

The truth is, the darkness is as much a part of me as any light, just as there is good in many people who are filled with hate and pain. I don’t wish for others to hurt, and I will still help whenever I can. But I want to rage in a fury, and rail against my hurts, I want to name them and not be ashamed to vanquish them with all the passion I have inside me.

I know I am good. I know my choices are mine as are my actions, and I know that those actions leave ripples in the world around me. But my feelings? They are mine alone, and I will rise with them in confidence. I will no longer be afraid of my darkness. I have faced the world’s uncaring control, and I have survived. I know I don’t have to drink it away, I don’t have to pretend it away, and I don’t have to make myself into something I am not. And I know that those incapable of loving me back, of facing their own truth, are perhaps wounded birds that need to be nursed back to health as much as they are toxic, scavengers of light. But I know too, that I am strong enough to welcome the darkness without falling into it.

Today, I have a new truth. I will dress my darkness in shadow to my light. I will work to highlight my bruises just as I will reach to brighten my shine. And I will live more thoroughly than I have before. I think I might even be happier!

The truth is, we all must find our own truth.

I want to live more fully in love, more generous in giving, and now I will because I will no longer deny the darkness. I want to see how I come out. I want to see what happens next, what I can do. I wonder what I will be? I may not end up as clean as I once dreamt of being, but I will take action with good intent, I will work to live in awareness, and I will be true.

Mind the Gap

Every two years Buddha is tested by the masters of care in neuropsychology at the Children’s Hospital of Philadelphia. At the very least it’s an exhausting exercise in stress management. At its crux, it is a test of aptitude, designed by super smart people, that strips brain function and ability to learn down to scribbles on a sheet of paper. It’s a rough couple of days, but necessary. It pushes our little man to his thinking brink and past his emotional limits, and it fills me with dread waiting for his place in the world, in school, to be whittled down to pencil marks and checked boxes on officially recorded forms. He is the kid on the paper and so much more.

The test is the tether between Buddha’s brain development, his epilepsy, his abilities, and the real world. It is an eight-hour gauntlet of academic prowess, executive function processing, cage fighting stamina, and emotional regulation manipulation. It’s given to see if and where his brain is progressing or regressing, to label any learning, emotional, or attention disabilities, and to validate or debunk any testing the public school system has done or not done.

It’s a bitch! It’s like trying to catch a NY subway as it’s racing down the track. It’s like trying to catch a NY subway while you’re naked, running violently through a crowded tunnel, where you don’t understand the signs, and the damn train is racing down the track. It scares the shit out of Dave and me because, with the results, we have to accept, all over again, this mean, ugly disease. We have no choice but to see where he is and where he isn’t. We have to have the courage to look at the steaming gap between him and the typically progressing world. And that sucks! Good or bad results, it doesn’t matter. We leave splattered by epilepsy and its bludgeoning gap.

This latest test seemed to be no different. Buddha did great and charged forward as only he can. In his Captain America costume and white blanky by his side, he led the charge with his tenacious, caring heart on proud display. And, as always, we left splattered. No matter how we look at it, no matter how proud of Buddha we are, no matter the strides he makes, he never really catches the train. We fail every time. It’s our job to teach him how to catch the train. We are supposed to lead the way, get there first, and make sure those damn doors don’t close without him.

Buddha did great, but this time, the gap is even wider. This time, we had to imagine a life where we are only ever running alongside, feverish and determined, but always missing the train.

Here’s where he stands. His academic scores and IQ are dropping. But, and thank goodness for this, not because he is regressing, but because the others are leaving without him. It’s good news; it could be worse, his brain could be deteriorating. (I didn’t know IQ scores could change but they can. It’s a marker based on a forced normal like everything else in the world, so I try not to be afraid of two those evil, stupid letters. I try.) He’s not losing brain power; it’s just that he can only do so much with what he has. But, with that, he is still moving forward, and that is a huge blessing!

His attention level was average, the little shit, because, that is not what we see at home. But it’s positive because it means he can buckle down in short bursts when it matters. The test is intended to push him, but nothing can replicate his day to day struggles, so we average the results and are glad for him that he was successful on the day. His attention scores also highlight his ability to hyper-focus through his ADD and anxiety, which is, at least, valuable information if not frustrating to him and his parents.

His memory is selective and in the end, will not likely ever serve him. Some of it works and some not at all, and each day is different. It does not matter the time of day persé as much as how we present him with retainable information. By the time he goes to bed, he can not tell you what he did during the day. But if you paint a mental picture for him, he gets the essence and the bullet points; he feels connected. If you give him three scenes he can recall the overall message of them, but we will not be playing memory any time soon. And let’s not forget to only give him two directions at a time.

Details are thin, timelines are moot, and sequencing is not an expectation we should expect. He will need graphic organizers for school and life, indefinitely, and he will always need tricks and reminders. In spite of that, intuition, feeling, and images help get him through. And, thank God, we live in an age of modern technology. He might have to take pictures all day to get him from point A to point B, but he’ll get there. Hopefully. Plus, he’s damn good at faking it! He can even fool me into believing he knows what’s going on when he doesn’t even know where he is. And that is good news considering how cruel people can be to fellow humans with disabilities.

His stamina is what it is. Considering he seizes every day and takes enough medication to kill a bull, it’s a miracle he can function at all. But, we’re managing that with daily naps and clipped activities. It’s the best we can do, and it’s better than it was a year ago.

Here’s what all this means. My son will not be able to learn or function at societies level of expectation, and the gap will most likely continue to widen, and he will most likely fall farther behind.

In many ways, all any of us can do is mind the gap. It’s the train’s job is to race on not worry about the gap. All we can do is mitigate our stress. All I can do is my best to teach Buddha to run, to fall, to rest, and to try again. It’s my job to teach him how to catch that train, to help him believe he can, and then help him accept falling without feeling defeated each time he misses it.  I don’t know if I have what it takes to do that.

I hated that damn gap! It makes me want to scream and curse at the sky and the seeming unfairness of it all, but there’s only so much we can do about that. So, we will keep running; we will keep trying to catch the train. We will tell him that he is perfect just as he is and that working hard and being kind is all that matters. We will highlight and reward all the beautiful pathways his brain does take and the difference he can make in the world because of it. We will tell him a thousand times a day that we love him more than anything, no matter what. We will tell him he doesn’t have to catch that particular train, that there will always be another.

But of course, that’s pretty much a lie.

 

Expectations-Kerri’s Take

It’s a flukey miracle that expectations haven’t been my downfall from humanity. I expect too much, too often, from too little, and it bites me in the ass every time.

I expected my father to love me unconditionally and always be there for me, I expected my mother to support us, spend every afternoon with us, and make me a star all on a single mom, teacher’s salary. (Which she pretty much did.) I expected my brother to always do what I told him, I expected my boyfriends to simultaneously father me, love me, and rock my sexual world, and I expected to be everyone’s saver girl while being adored and admired for my selfless efforts.

Obviously, I was young, scared, and naive. Obviously, I was left disappointed more often than not. And, obviously, I left many of the people I loved disappointed because I couldn’t accept them for who they were.

I understood, even at a young age, that expectations were a lose-lose proposition for me. I didn’t understand why people couldn’t just be kind, helpful, and loving…in exactly the way I want them to be, and I knew that attitude was keeping me from really growing up. It was keeping me from becoming less naive, less scared, and ultimately less hurt. It was certainly keeping me from healthy relationships. But I couldn’t figure out how to stop myself from falling prey to everyone else’s opinion, from expecting others to let me down.

You know what’s amazing for expedited personal growth? A very sick child. It is crazy how quickly you can get your shit together if, of course, you survive, which no one was sure I was going to do, when your child gets sick.

One day, I was absorbed in my own dreams, working too much, and planning on setting my kid up to become a pro hockey player. Then, the next day? I was just praying my son would live. It’s a steep learning curve, a sick child, but an effective one. When that happens, you “shit or get off the pot” as my granddad used to say. And I? Well, I…

I survived, and I learned. And I am grateful in a Thanksgiving times infinity kind of way. And although it’s still a work in progress, I am so much better at setting expectations. 

I’m much less judgmental of people but I also don’t take crap anymore. No one person can wound or leave me begging for mercy as much as watching my child slip away did. Helpless. Powerless. Those moments are not something you ever unsee and they change you. Permanently.

I won’t lie. The wounds are still there, ready to freshly pop. But damn if I don’t have a whole new outlook on expectations. I now have a realistic perspective of what I can expect from the world and other people, mostly, and the courage to ask for what I need. And because of that, I am stronger, happier, and feel love more deeply than ever before. Truth be told, I was never great at declaring my needs properly before operation epilepsy.  But, I get it now.  

The virtue of expectation done right is the time and effort I save dealing with crisis and disappointment. Once I had the courage to set appropriate expectations before the fact, I no longer had to clean up the mess of responsibility and hurt I used to when I was waiting for the world to abandon me or bend to my whims.

It’s a total win-win.

Well, setting and declaring more realistic expectations and living better because is a win-win, not epilepsy.

Epilepsy can bite me! And that is an expectation I am fully prepared to manage!

I had to let go of my ego, the part of me determined to outshine everyone else, to save everyone, and come to terms with the fact that more was not better, faster, not cooler, and that making things complicated did not make me smarter.

Understanding and knowing are two separate steps in the process of any growth. When I’m teaching I know exactly how to direct through those steps. I see the separation and have steps to help them build a muscle memory bridge that connects understanding to knowing. But damn, no matter what I did, I couldn’t build that bridge for myself. I needed something more dramatic than my own baggage to open my eyes. And, ironically, I needed to be the best person I could be if I was going to help save my son. Well, if I was going to not get in his way and help him live the life he was destined for. Obviously, I learned that lesson pretty quickly. His life is not mine to control.

I know I can’t control epilepsy and I’ve accepted that. So, I’ve grown up a lot in the last four years.

It’s not always easy, but I am so much better at setting expectations. Most of this change has come from experience. But I always love good direction. So even though I am in a better emotional place to set and manage my expectations, I still use these steps. I hope they might help you too!

  1. Read the Room.
  2. Decide how to state expectation in a way the person receiving it will hear.
  3. Think before the fact about how to respond if the expectation isn’t met.
  4. State expectation directly. Speak lovingly but firmly, looking the person in the eye. Be aware of your tone, it says more about your message than your words.
  5. Do not expect the expectation to be met.
  6. Do not take it personally if it isn’t met.
  7. If the expectation is met, cheer like crazy!
  8. If the expectation isn’t met, decide whether what you needed was too much or be ready to walk away.
  9. Go into your bathroom and cry and scream into a towel.
  10. Go back and try again.

 

 

 

 

 

 

 

 

 

THE WONKY PLACE: PART 2

 Just to recap, the wonky place is what Buddha calls his episodes. An episode is an uncontrollable moment of anger or sadness. It can last 5 minutes or it could last 45 minutes. Unfortunately, when a child goes into his/her episode there is not too much you can do except keep them and others safe. Which looks different depending on the types of episodes they have. Some kids are more verbal, while others are physical.

I first learned about episodes/crisis while getting my master’s degree in special education. However, all children, despite their disabilities or abilities, can demonstrate moments of high emotions.

STEPS TO REACTING TO YOUR CHILD DURING A CRISIS/EPISODE:

  •  Check yourself- How are you feeling? Are you in a good place to speak to your child? Are you angry already? Do you want to yell? If the answer is YES then ask someone else to tag in. I know it seems silly, but the best way to de-escalate your child is if you are in a calm mood. And be honest. It’s ok if you’re angry or annoyed, that is totally normal! As a teacher, there were many times I asked another teacher to step in and take over. So if possible, tag another person in when you’re home.
  • How are they- After deciding you are in a good place to deal with negative behaviors (i.e. you don’t want to rip their head off). Ask yourself what is going on with my child? Are they hurt? Are they hungry? Are they tired? Do they NEED something? Do they WANT something?
  • What’s going on around- Next, take a moment to look around you. What do you see? Are there loud noises coming from somewhere? Is it cold or really hot? Are there people around that could be frustrating your child? Is it too bright?
  • How can I help- The last thing to think about is what ways you can help your child. Do they need you to verbally calm them down? Do they need a tight hug or some soothing music? Do they need food? Do they need to change? There could be a number of ways you can help your child so trust yourself in choosing. If one thing doesn’t help, try something else.

The most important step and usually the most overlooked is to check yourself. If you are frustrated or angry that is TOTALLY fine and understandable. But, try not to deal with the situation if you are. TAP OUT. Think wrestling- when they’re tired and know they can’t beat their component they tap out to someone else. It’s not as easy. It takes some time to master. I remember the first 6 months of teaching I wanted to be the one that got my students out of their crisis/episode, but once I figured out that the crisis would last much shorter and less dramatic if someone else stepped in. Remember you’re not giving up and it’s not that you’re not capable of doing it, it’s just not the right time.

Tone.

Everyone’s spiritual journey is perfect. At least according to Deepak and Oprah. I guess it’s true, I certainly like to think so. God knows I’m always looking for answers to explain life’s pain.

Though my spirit has pockets of doubt, there is something about its journey I am certain. My trip is largely made up of tonal experiences. I am body and soul.

Tone, for me, is everything. it guides me, shapes me, and alerts me to the dangers of the world. Maybe more than it should, but for me, it’s a center point around which I can more confidently live.

Tone dictates how a message is conveyed and it determines how I am perceived. We live in community with ourselves, with each other, with our thoughts, with our pain, and our joy. Tone will always decide on which side of the emotional coin we land.

Here’s the catch. There is no pure tone. There is pure heart, spirit, essence, intention, however, we name it, but there is no pure tone. At least none we can take in with traditional anatomy. We hear and see subjectivity with perception. We feel frequency and sense intention.

We don’t hear ourselves in the same tone that others hear us, or as, say a microphone does. We don’t see ourselves as others do, as a camera does, as does a mirror. But, without a device to filter our tones, whether that be awareness, lessons, feedback, or a simple app, we can not get an idea of the tone of our messages. We can not really know how we live in community with each other or with ourselves, how we hear or see our own tone without a bounce back. Without a reflection.

We’ll never experience ourselves as others do. And that’s OK. I guess I just wish we could all pay a bit more attention to our tone.

I have spent most of my life listening to, analyzing, considering and teaching tone. It’s my job. It’s an organic part of how I live and witness the world. First, I was a professional child of emotional trauma, subconsciously attuned to the intonation of those around me in order to gauge if I needed to be afraid or not. Afraid for my heart or my person. And then, as a student, performer, and teacher of voice, dance, and acting, I honed my skills. Because tone is not only audible but physical and visual, I wanted total immersion into the sensations of tone. I thought it might make me feel a little safer, help me understand others and find a connection with them. As I amplified these skills, I began to understand them. But the answers unraveled more questions, leading me down an endless depth of listening that I continue to explore, I must continue to fine tune their meaning, their placement, their inception. That is how I feel my place in the world, that is how I know to trust, to love, to let go, and to run or to fight.

I have been a teacher of these arts longer than I’ve been an emotionally well-balanced person. I know that sounds dramatic and a bit gothic, but my point isn’t to spotlight my emotional journey as much as it is to give a foundational background in my experience with tone. I have listened on many frequencies and heard from many perspectives, and that gives me an interesting point of view, if not an expert one.

I am careful not to manipulate tone because it is ultimately important to me to be as authentic as possible. Except, of course, for the scary times when authentic is an honesty I can not bear to endure and I try to hide, to make up, to change the script, the image, the sound. My mind says, run and hide, protect yourself. By my damn heart has a mind of its own and is determined to pin me to what is real, even if I don’t want to be exposed to it’s tone. So, the times of new social encounters, doctors appointments, conversations about money with my husband, a conflict between myself and a mom of one my son’s friends,  IEP meetings, Psychiatry appointments? These are moments try to manipulate my tone so that I am heard and taken seriously. I am not always cared for in these moments, and that is hard for me.  But if I can’t be cared for, then I try to be heard.

I am rarely successful at this. As usual, my heart betrays my mind and my fear comes riding out on a black horse draped in defenses, kicking up weaknesses with every stride. My pulse races, my speech flutters in fits and spurts, my breath is rapid and gives me away.

My tone can not be missed.

If my spiritual journey is, in fact, perfect but still tone essential, then it all goes back to the balance of not caring what other’s think of me while still being aware of the frequency they’re sending out, and finding comfort where there is none to be given.

Inside myself. It all goes back to the tone I use toward myself.

For me, it always goes back to tone.

 

PART 1: THE WONKY PLACE

When I started working with Buddha he had these moments that we would call “episodes”. Basically, they were flashes of uncontrollable anger and/or sadness. Buddha decided to name the episodes the “wonky place”.

A lot of my students, most of whom had emotional disorder or autism, portrayed the same rollercoaster of emotions. However, in school, we would call these moments a crisis.

Unfortunately, once an episode starts, you usually have to wait until the child rides out the emotion, which can be REALLY challenging. Especially since the child can become verbally and physically abusive.

What they look like:

It is important to know that all episodes/crisis look different depending on the child. However, bellow is a list of things that I have seen both my students and Buddha do during an episode.

  • Biting
  • Spitting
  • Kicking
  • Hitting
  • Scratching
  • Throwing objects at both you and the wall
  • Cursing
  • Threatening
  • Crying

I have seen students do all of those things to themselves and to others. While the behavior is not ok, you have to realize that it sometimes cannot be controlled. I hope that by reading this list you can both relate and understand that you are NOT ALONE. That it is NOT your fault when your child portrays those actions and that 99% of the time it is NOT personal, no matter how specific they are.

How they start:

Something simple could set any child off. Below is simply a list of examples that I have personally seen set a child off.

  • Asking them to do a task they don’t feel like doing
  • Asking them to do a task they don’t know how to do
  • Transitioning from one thing to another (usually something fun to work)
  • A change in the schedule
  • Something changes about their routine (i.e. asked to eat breakfast before getting dressed)
  • Not giving them attention/ ignoring them
  • Raising your voice at them
  • Asking them to stop something they do not want to stop
  • It could also be medical:
    • Medicine could be too strong or wearing off
    • They could be overly tired
    • They might be experiencing something in their body that they can not explain
    • Their heart rate might be going up
    • They are in pain

 

Again, an episode is simply a moment of uncontrollable emotions that some children experience. Remember the word uncontrollable, because even though it seems like they are in control, they usually are not. It is important to know that it will pass. And the most important take away is that it is NOT YOUR FAULT. Never blame yourself or your child. They are on a roller coaster so you can ride with them or watch from the side. Either way, you must let them ride it out.

 

A Med for You. A Med for You. A Med for You.

We are no stranger to meds.

Want to know how anti-epileptics work? Give us a call.

Want to know how they metabolize in children? Yeah, we’re pretty much experts in that.

Want to know about reflux and constipation, cramps, and how to mitigate all versions of pukiness? We’re your go-to family.

Want to know which meds have a short half-life or a long half-life? Just ask us.

Want to know how anti-epileptic meds interact with each other? Done.

Want to know about adverse side effects? Here let me show you the book I’ve written on the subject. It comes with pictures and stories and a vial of endless tears.

Want to know about mood stabilizers?

Oh, wait. Gimme a minute, we’re just getting to that one.

For almost a year, we’ve been trying to decide between an antidepressant, a stimulant, or an anti-anxiety med…for my eight-year-old.

It’s taken four years of growth and mental development, anti-epileptic trials, and countless Vanderbilt tests to try and flesh out if Buddha’s behavior and emotional IQ is rooted in epilepsy, ADHD, anxiety, depression, or side effects from his anti-epileptics. It’s impossible. Because of course, it’s probably all of the above.

The question is, what do we medicate and what do we leave alone?

I told Buddha’s psychiatrist, “I just want to make his life easier”.  “I just want it to not be so hard for him to get through the day. And we’re at a point now where the tricks and tools aren’t enough.”

We have so many tricks on hand to make his life easier we should have a Vegas Show, and I should be walking around in sequence, Vanna Whiting all over the place with Dave pulling rabbits out of hats. Seriously, we will try almost anything to ease this kid’s daily challenges. And we have some damn good tricks.

Meds are serious. But so is mental health, and we are performing our due diligence. We have been considering these mood meds for almost a year. For our eight-year-old! We’ve been collecting data, weighing the pros and cons, and consulting other parents. We have monthly follow-up appointments with his neurologist, his psychiatrist, and his psychologist to talk through the options. We are trying to foresee all outlier possibilities and be aware of all the pitfalls. Mostly, we just want him to have it a little easier. Isn’t it enough that he seizes every day?

Until recently I didn’t think there would ever be a scenario in which we would add one more med to this poor kids’ already overloaded system. But then, of course, life is harder at some moments than others and answers can present themselves before the questions have fully formed. So when second grade with more demands and fewer friends happened, developmental stepping stones ramped up, a new antiepileptic drug with major adverse side effects was tried and tried again, we started to open our minds to the idea. Then three trips to the ER, one admission, and one intervention in which they spoke of taking him to the psych ward…or whatever they call it nowadays, hit us over the span of just a few months we were more than ready to pull those magic mood shifters out of a hat.

It’s hard enough to diagnose ADHD, anxiety, or depression in children, but add epilepsy and four other meds into the mix and it’s a downright, ‘your guess is as good as mine, let’s just try it and see how it goes’, Frankenstein experiment.

On an eight-year-old!! My eight-year-old!!

The cruel irony is that it’s very common for kids with neurological disorders to suffer from other neurological disorders. I guess it all goes hand in hand, or synapse to synapse, as the case may be.

So, here we are. Lit up for the world to see on a stage I could never previously imagine standing, and I have stood on many many stages. We’ve hit our mark and we’re getting ready to experiment again in the hopes that this time we might create a life without thoughts of death, high-cost impulsivity, or major emotional dysregulation. Mostly though, we don’t dream that high anymore. Mostly, we just want to ease his challenges and help him get through the day with some moments of emotional freedom that aren’t scheduled, measured, timed, or earned.

So, we’re waiting to check a few more boxes before we add another bottle to the already filled pill drawer, and then we’ll capture some lightning and flash it through the audience to see what we get.

Please hold, for Act II.

 

To-Do List or Not To-Do List…Do!

I used to hate making to-do lists. Oh sure, I loved the promise of a job well done, the enticement of items ticked off and completed. I’m a sucker for success. But I hated the pressure I felt from the ominous list of shoulds. I should be doing this, I should be doing that. Oh crap, I forgot what I was doing and now I’m not doing what I should be doing. Or, what the hell was I supposed to be doing and where did I put that damn list? Etc. I hated feeling like I was being directed by an omnipotent, bossy list that I was also responsible for creating. Hell, I can’t remember why I come into a room most of the time, how am I supposed to be responsible for breaking down big goals into doable steps each day? I clearly did not think I was up to that level that of accountability.
Because I don’t like to fail I would save myself the shame of guilt and regret by simply not writing a list to begin with. Then those judgey unchecked “done” boxes could never get the best of me. Ha! Yeah, ha. Jokes on me.
I used to think it was because I was a free spirit who did her best work in the moment. Organic and impulsive is when I’m at my peak. Or so I thought. I liked the panic of crunch time, the impending doom of missing my mark. That’s when I felt most empowered. Yes, I was ultra productive when I pushed it to the last minutes, reacting off of pressure rather than planning. Picking the red or blue wire with my career and self-esteem seemingly riding on the line led me the to success and an awesome high. Or so I believed.
But that risk got too high when my son’s wellbeing was on the line. And now I see how the risk was too high for my wellbeing too. I see now, in my chronic disease wisdom world, that if maybe I got lucky and paid the bills or did the laundry, or even ran a business without a list, I never really got to everything I needed to or dreamed of. I never really gave life my all.
I never saw what I was missing until epilepsy. I didn’t see the limits I was fabricating until real-life limits slammed down hard and stopped us in our tracks. That’s when I realized how deep my history of self-sabotage goes. That’s when I was afforded a new perspective and able to look honestly at how powerful I actually am. I was able to own that making the choice to set steps for the day is not a trap but a liberation.
Funny how making a to-do list is kind of the same thing as setting an intention. Setting your dreams, your goals in motion.
No wonder I hated them. They are always unfinished.
But now I know how tenuous life is. I don’t mean the created soap operas I like to create I mean real life actually ending. For real.
So now I know, in my bones, in my cells, in my heart and in my mind, life is always unfinished. It’s not about what you don’t get done, it’s about what you do! It’s how you chose to live that matters. And it is our choice how we want to live, even if epilepsy isn’t.
Life has a funny way of making you face yourself. And when it came down to actual life or death for my son, I wasn’t going to fail!  It first I had to admit I couldn’t do it alone. That took about a year. Then we had to find Alex. That took almost six months. But then, I knew I could survive and I was open to anything! And that’s when I awakened to the magic of a to-do list. That’s when I awakened to the power of choice.
And now my life and Buddha’s life is better. In a way, it’s better than ever. We’ve reached heights we didn’t dare dream for. He hits milestones previously out of reach and we celebrate them as never before. No, they are not typical milestones but they are magnificent. And they count! He is self-aware and responsible and he is more confident than ever. And our days? Oh! They are so much better. So much less stressful. There is less crying, less reacting, less anger, less fear. Our days are so much more fulfilled.
In a way, we owe it all to the to-do lists. In a way, they helped save us. I realized, by the grace of God and the indemnifiable Alex, that is wasn’t to-lists that weren’t working for me. It was me that wasn’t working for the to-do list. And now our life is working for what matters. Living!

Summer with Epilepsy

I love summer! I love the freedom, the vitamin D, the light, the change of scenery, and especially the pace. We swing full throttle between energy and placidness like a feather on a lake crest. We bounce between beaches, lakes, museums and play dates, to chilled out self-confinement in our beautiful home until we feel rested and recovered for more sun-filled jaunts. We read, we write, we study, we play, we connect to our bodies, we talk and laugh and live. In the summer we touch every part of living, especially the marks we miss during the year. The marks we miss because of epilepsy.

We’ve collected three years of data now, so I am confident summer bliss is not a fluke. With or without seizures, and let’s be honest we’re never without seizures, it’s the only time of the year we have moments of normal. Moments where Buddha doesn’t feel separate from his peers, moments of ease and flow. In the summer we are not harnessed to a schedule that perpetuates his disability. In the summer we are able to expand and live at whatever pace he needs and the only thing perpetuating is the light in his eyes.

We have bad days, we have wonky place episodes with aggression and hate, we have therapies and lessons. We have tutoring to help him keep up with the gains he worked so hard to make during the year.  And yes, we have schedules. Oh my, do we still live by schedules. We have schedules, timers, to do lists, and point charts for every step of the day. They are his anchor to the world, consistencies that allow him the confidence to expand and explore new sights, new thoughts, new feelings, and new experiences.

But even these bad days are better in the summer. They don’t spotlight the discrepancies in his growth to his peers. They don’t mark his slower progress. Instead, these days illuminate his progress. In the summer, his kindness, his strength of will and heart, and his ability to move through endless cruel fits of fate are bathed in a halo of sunshine that allows him to see how powerful and amazing he is. Summer is the glowing lens through which we see how stupid the idea of normal is. How unnecessary to his success.

If only that were true all of the time.

Fall will be here soon and he will have to once again begin the daily battle of trying to live everyone else’s version of normal. He will try to make it to school a few days a week. He will maybe, just maybe, have the energy and forward brain activity to allow for a sport or activity. He will begin to use his schedule not to mark the fun and progress but to count down the minutes until he can rest for the night after the mental exertion of the day.

In the summer Buddha gets to be Buddha. In the fall and winter and spring, Buddha is the kid with epilepsy.

I love the summer.

I love my little man.

I wish it could always be summer.

“Should I Stay or Should I Go Now”…Love Part III

“Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
And if I stay it will be double
So ya gotta let me know
Should I cool it or should I blow? ”
The Clash

A funny thing about living past my 20’s and 30’s is that I can’t help but notice trends in my coping style. I can’t help but gather data that paints a picture of who I’ve become. I suppose, on one hand, it’s another way of saying, “the choices you make define you.” But I think it’s more than that. In my 20’s, despite my best intentions and attempts at self-awareness, I thought I was breaking patterns. I thought I was defining myself. I did try, and that counts for something. I believe it was part of the process, and I’m not un-proud of who I am. It’s a boon for me that I love big and I love hard. It’s an emblem I am not ashamed of. But I spent much of my life loving and leaving fast and I see now how it’s led me here. I’m good. I’m where I am in the moment, and it’s OK. I guess I just wonder if I was meant to be or could have been someone or something else. If I could have been more. I wonder if there is still time.

Mostly I’m just surprised by how much I thought I was creating of myself when in fact I was simply responding to programming and becoming.

Despite my most deliberate efforts, I lived my defining years through a set of experiences I had very little choice in making. My childhood imprinted the belief that told me who I was so the choices I made were choices I was bound to make.

Should I stay or should I go was my subtext and I didn’t even know it. In a way, should I stay or should I go determined the course of my life. It certainly determined who and how I loved.

I wasn’t able to see how I had internalized my childhood life until after I had made choices based on it. It was only through reflection of that “lack of choice” that I was able to finally begin becoming the person I wanted to be. I suppose that too was a process in the making, and part and parcel of being a person, so it’s OK. I guess I just wish I hadn’t taken so long.

Nevertheless, here I am, not too much worse for the ware. I’m still standing. I haven’t given up. I’m happy. I’m not happy in the way I thought I would be in my twenties. But deep in my being, I know happiness because of what I’ve lived through. I know a new happiness because of the love of people who stood by me, including love I’m learning to give myself. I guess at the end of the day, that’s pretty impressive.

“No one’s gone till they’re gone”.
Fear the Walking Dead.

I find this idea of “becoming’ endlessly fascinating. And I always wonder how “being” applies to love.

I want to know, realize, and become everything I possibly can. I want to see, really see, who I am. I want to be the best version of myself. Mostly, though, I want to help guide my son’s childhood with as enlightened a hand as possible. I want to know I did my best to help him walk a path where he makes better choices in his defining years than perhaps I did. At least less desperate choices.

I live by gut and heart…and then the brain. I love my passion and my drive, I’m OK making my way through the heart first. That being said, I was smart enough to marry a computer developer and inventor who lives by data. Also, Buddha’s diagnosis has proven impossible to survive without data and logic So, luckily, I have also come to appreciate, if not love, data.

I can be taught.

This sentence, I love data, if you knew me when, is a complete juxtaposition of who I was or wanted to be many years ago. But there it is. Life and experience that lead to a choice where I am now an avid gawker of data. (Just for the record, I don’t have a spreadsheet or anything. I write I think, I reflect. Some systems just don’t need to change.)

With new wisdom, experience, love and forgiveness, fault and failure I use this data not only to understand myself but how I define love. Because to me, it all boils down to love. How I love myself determines how I love others. The better I love others the better I love myself. Round and round it goes until purpose, contribution, peace, and happiness all collide. At least that’s my theory.

I want love to be what defines me. Big love.

Collecting four decades of data on my personality, partner choices, jobs, achievements, and relationships I found some interesting trends. Trends that help me understand what love means to me and how to love better!

Here are my 10 most common trends based on this data.

1. I am loyal to a fault
2. I crave affection and soothing in atypical amounts. Meaning I need more than a lot of love to make up for love taken as a child.
3. Justice is subjective unless you’re cruel to others. Then your just an asshole.
4. I am an addict, therefore, until my 40’s, my life was seen in stark black and white.
5. I want to save the world from loneliness and unworthiness. I want to be saved from loneliness and unworthiness.
6. I believe in hard work and purpose. The search for the meaning of life.
7. I am a good leader, not a great employee.
8. I believe I am good enough for success but don’t really believe I deserve it.
9. I have judgment for people who have children that aren’t willing to become what they need you to be to raise them without loneliness and unworthiness.
10. Perfectionism is a blessing and a curse but not something I’m entirely willing to give up. It’s a mark of my coding.
11. If you hurt me, you are dead to me…forever. Without even a goodbye. You are erased.

And here lies the rub. Number 11: If you hurt me, you are dead to me…forever.

“Should I stay or should I go?” Most likely, I will go.

Not very enlightened.

My subconscious definition of love is equal to abandonment or enmeshment. So, I believe that if you love me, you will leave me or assimilate me. In attempts to hold my own boundaries, to be myself, I leave people as fast as I fall in love with them. At least I used to.

I am learning that’s it’s allowed, even right, to redefine love as we go along defining ourselves. I didn’t believe that as a child and think it’s why I’m happier now. I have given myself permission, more and more each year, to chose love that works for me rather than let love just happen to me.

If you hurt me enough, you will be dead to me. But if you keep trying to communicate, to understand me as I try to understand you, I won’t run anymore. I will stick it out.

Your path isn’t mine to decide. You have the choice. I don’t want to run. I don’t want to be a runner. I just want to know I’m worth more than tolerating abuse. I want a big love that’s real love.

I’m not entirely healed so if you love me, please don’t fuck with me. I will go and that will be that.

I want to choose to stay instead of go. I want to see who I can be, how much better I can love when I stay instead of go.