Epilepsy Awareness Month. Day 9!


As a part of Epilepsy Awareness Month, @lifeelektrik issued a 30 day challenge encouraging us to share information, pictures, and pieces of our personal stories themed around daily topics. It’s a clever and fun challenge that I assumed would be easy.

We’ll ignore the fact that the last thing I need right now is another challenge and will instead go right to the excitement I felt by the prompts and the idea of sharing pics of my cute kid. An added boon, I thought was that people can see that epilepsy doesn’t have to mean unhappy!

On my first attempt, 8 days in mind you, the challenge of the day was to write inspiration. Cool theme with a positive edge. I liked it! I was pumped to spend some energy focusing on big picture, happy purpose ideas and not just the day to day getting by. I figured, I have tons of things that inspire me, I got this…

….until I tried actually writing.

According to Google, inspiration is something that makes someone want to do something or that gives someone an idea about what to do or create.

I began to realize how little inspiration I have. I mean, I am constantly surrounded by people and miracles that amaze, and more so, I’m aware of them. Plus I’ve lived most of my life as and actress, dancer, talker, teacher, lulled and pushed by inspiration that I was, at one time, able to find in any and everything, from a dust bunny floating through a sunlit room to grand cathedrals and excellently executed musicals. But, I realized, I am undoubtably not in a place that leads to creating anymore, I can’t honestly remember the last time I was. In fact, I’m down to bare bones. No more acting, no more teaching, no more shows, no more song writing, no more creative playdates and parties, no more Pinterest pages and Etsy stores. I can barely keep a blog going.

All of a sudden inspiration as I once defined it, as Google defines it, was not just evasive but missing entirely. So, as I was beginning this post, I was writing and rewriting, sounding more trite and more flowery, as my mother used to say, with every iteration, but I couldn’t land on any true segment that didn’t sound like a corny, blurry meme. 

I began to see that how I define my life, how I perceive it, and therefore how I describe it is like being half of a newly broken island that doesn’t realize it’s been cleaved in two. An island that feels the tide tearing apart it’s foundation and  as it hurls water and force on the newly severed beach but can’t take cover or move to ease the ripping of the seams. I see the other half, understand the separation, but I don’t adjust. I still feel the same undercurrent. I still use the same rhythm as when we were whole. When now, being whole is up me alone, and not the same thing at all.

Words don’t mean, things don’t feel, like they used to before his diagnosis. To answer, “what inspires me” is not just loaded, but flooded with every tear, smile, fear and victory we’ve been through in the last three years, which were nothing like the first 40. And those weren’t all easy!  It’s to acknowledge and define how I I’ve been altered down to a cellular level by this experience.

System overload! Pulverized by circumstances bigger than I can really handle, and way beyond my control, inspiration is a spiritual tool I can not truly muster, right now.

What could I possible say, but, “he does”! HE inspires me! Of course he does. I am in awe of him every day! But watching him suffer and lose parts of himself, lose the right to live the life he came into the world with, to this stupid “electrical problem” that no one can find a root or cure for is too cruel a mechanism for inspiration. It’s like the side effects of his meds. Sure, they take away some of the seizures which gives him back his life. But, they also take away his ability to feel like himself, to feel right and good, to function and regulate without a Hulk’s amount of self-discipline and pain. They also keep him below any level or standard despite his cleverness and willingness to learn. Yet again taking away his ability to really live his fullest life. At least that’s how it gets written with the old words. Is his suffering worth the inspiration? Hell no! Are the side effects worth the meds? We don’t have a choice. We don’t get a say in that one. So we’re grateful and we wait for a miracle, and we cherish all the good.

But are we inspired? No.

I know it’s maudlin and probably over dramatic, not to mention silly, to pick apart the semantics like I have nothing better to do but play with words. But I realized how important this is to me. How often I am at a loss for just the right phrase to illustrate how our story has impacted us, how it’s changed us. It’s all duality. Yes it’s hard, but it could be harder. Yes he’s at school, but no it isn’t just needing accommodations. Yes, I’m a worrier, but this is real shit to worry about. Gratitude and resentment. Acceptance and Denial. Love and Fear and more love and fear! I know beauty and magic and gratitude in depths I didn’t know I was capable of, and that’s important. It’s something taken and something given at it’s purest point. It’s the human experience. I see it. But how do I really describe it? And to go so far as to denounce inspiration? That’s a pretty bold statement, even for me.

I have to say, it surprised and embarrassed me how this topic threw me. Buddha is in second grade and can tell you what inspires him. Ladder number 9, Captain America, hockey players. He feels goole-definition-inspired by these people, reflected in every game, every costume, almost every breath he takes. I figured inspiration would be easy. I have countless examples of people and experiences that propel me forward into hope and happiness. Buddha’s positive self-talk, the fact that he has NEVER cried at any of the hundreds of blood draws he’s had, whereas I had to literally be dragged in and held down until I was in my twenties! I wanted to write about the parents I know who love and encourage their kids to be exactly, uniquely, who they are. For people who can let go and smile and live! For teachers that build self-esteem and still manage to teach weird math that I can’t figure out. I wanted to write about the way the sun rises over the center of Philly, right over William Penn, and slices the building tops with lego-orange fire swords before blurring out the sky into a cool blue, and the ridiculous good fortune I have to watch the awakening from the 23rd floor, corner condo we just bought. I wanted to write about my husband’s bizarre ability to take emotional issues and rise above them out of sheer faith in the steps of knowledge and action. I’ve never seen another human shift their perspective, let alone behavior, more routinely and under such pure and good intentions as my husband does. He makes it seem so easy to change. It’s actually kind of irritating.

I wanted to write about my mom and my sister and all the other parents I know forcing themselves up this endless mountain of pediatric illness.

But still, I couldn’t find the “inspiration”. None of it made me want to get up and start a charity or volunteer or write a book. None of it created a magic bubble idea capable of curing him or anyone else. I can see it and I believe it, but I can’t feel it. I can’t find the words because the key word isn’t right. I don’t have the luxury of leaning in to inspiration.

The most I can muster now is motivation, even empowerment, but not inspiration. I feel motivated by the strength and goodness I see in people going through their own trials, by the soft emotional fill of a sunrise, by the powerful energy of good vibes and offered prayers, by my husband and my family. But inspired? No. Inspired is for dreamers. There isn’t room here for dreaming. At least not right now. Like life and his condition, it’s deeper and more complicated than inspiration can hold. It can’t be addressed in the same perimeters. It doesn’t use the same vocabulary. I hope and pray and watch and learn. I do and I wait. But I don’t dream. I am not inspired.

The impetus is always to react never to initiate, to create. That was taken. He’s still here and with us so more was given than taken, but I was not left with the capacity to be inspired.

I can not find the words but I am not despondent, I have not given up! I am re-editing myself and my expectations by trying to see the moment, acknowledge my feelings around each situation as clearly as possible. I am hopeful but realistic. I am spiritual without being naive. I am moved by the passion and goodness of people pushing that pain-in-the-ass rock up a mountain they know will never stay. I am motivated. I am one bad ass momma out to make it right for my kid.

I may not feel inspirited, but I can recognize beauty and feel happiness. I feel such love as I’ve never known! But the other feelings? The pain? They’re too big for me and wash out things like inspiration. Yes, the sunrises help. Family helps. Being pleasantly caught off guard by a simple, kind gesture from a stranger helps. These things keep me fighting, and they keep me soft. They keep me tethered. The keep me present. They remind me that without loss there is no gain. Without ugliness there is no beauty. They give me hope that it’s all worth it. That, in fact, it just might all be beauty. It might just really be all semantics.

Take Yourself to Breakfast

Epilepsy Awareness Month. Day 6!
When all else fails take yourself to breakfast and quote a great song!

“It’s always tease, tease, tease
You’re happy when I’m on my knees
One day it’s fine and next it’s black
So if you want me off your back
Well, come on and let me know
Should I stay or should I go?”
-the Clash

It’s a bit maddening, this epilepsy. One day is fine the next is black, and sometimes the next and the next, and then it’s fine and then it’s black. It’s a big tease..and not the good kind!

He was down to just a few seizures a week, maintained emotional regulation, steady cognition, and even after school tennis one day a week. But the slow decline from the stress of moving, the toll of school, and this crazy diet that gives him reflux and worse, we’re now back to 4-6 seizures a day, major emotional outbursts, constant stomach aches, and a general state of feeling bad. And there’s very little we can do about it but move meds around and wait. It’s just his life….right now.

There are magnificent days! But the madness lingers and all I can do is control how I handle the waiting, how I handle the process. I HATE waiting. I try meditating, I try working out, sometimes I try shopping. I take such hot baths I almost pass out. I try not to cry. I get pissed off hoping the action of anger will help, and then I succumb and realize it won’t…and cry. I try everything…except drinking. I can’t escape. I have to be ready. So I have to control how I handle the waiting. I’m at about 40-50% success rate right now which is way better than I was 6 months ago!

I used to force myself through these times like a starving tiger on the hunt. Too tired to persist but too hungry to stop. Now I slow myself down and try to live in ten to twenty minute increments. And I treat myself. I never used to, but I do now. I treat myself with respites to breathe and be before resuming the hunt.

Thank God for breakfast at Parc! It’s my favorite place because when I’m there I feel like the me I thought I was going to be. Free and a little bit fancy, enjoying my perfect French tea. It’s not that I resent or hate the me I am, but when I can see the trees and watch the people go by I can once again think and dream. I can pretend, for a moment, it’s all not such a tease. In those moments, I’m just another city livin’ woman after drop off eating breakfast by the park.

Should I stay or should I go? I’m not going anywhere! But if you can’t find me, I might have snuck off for a quiet cup of tea!

Dream Big, Baby!

Epilepsy Awareness Month. Day 4!
You can be anything you want to be….except that.

Trying to be a positive, well researched and mindful role model while constantly PSAing Mr. Roger’s-like life lessons so that my kid is set up for a successful happy future is an impossible task. But trying to secure Buddha’s future with the uncertainty and constraints of epilepsy is a flat out exercise in futility. Not to mention a testament of my control issues and ego. I know this, but yet I can not stop!

As a teacher, I have noticed two bold styles of parenting when masterminding this future dilemma. No matter what we say, we all do it one way or the other. We tell them to dream big or dream real! We tell them they can be anything and nothing is out of reach. Or, we tell them to use their smarts and their hearts to navigate the unfairness of a base world where unavoidable cruelty will inevitably find them.

As a mother, I am constantly batted against these two choices and left feeling like I have somehow let my Buddha down.

I, by default, fall into the Dream Big category. I believe in always leading children to trust themselves and go after what triggers their souls! But I am afraid too. Isn’t it my responsibility to help light the way so he sees the reality of it all? How do I tell him that sometimes, most times, dreams don’t come true, knowing then they never will? How do I slowly show him the world without it breaking his heart? How do I let the world break his heart but help him believe in himself enough to rise above it and reach his dream? How do I let him live his own lessons and grow in his own spirit and life without being a neglectful parent?

And please, PLEASE, do not say the word balance?! I know it’s all about balance. Let me know when someone gets that bottled:)

In my experience, children don’t think about their futures in the “means to an end” sense we do. They live in the moment and want only to have futures that reflect their immediate and most internalized needs for safety, fun and attention met with as little push back as possible. They don’t realize that pretending to be a star or a doctor, an inventor or a truck driver, or even Magic Saver Girl (that was my best dream) is already identifying that basic human need we all have to find purpose. Playing through passions that are as light and fun as their shifting attentions is their idea of the future. It’s enough for them, and I think that IS magic.

From the time he was two, Buddha wanted to be a famous hockey player. He wanted to feel the power of the crowd and be the fastest, best goal scoring guy on the ice! He never stopped playing hockey…until he got epilepsy. He still loves it and thinks if he works hard enough and practices long enough he can be that famous hockey player. The problem is, he doesn’t have near the stamina or stability for hockey. Not to mention that getting hit and crunched against boards is beyond dangerous for someone in his condition and a liability beyond plausibility.

So what do I tell him? What do I do?

Be Real or Believe, that is the question.

Because does he really have a shot at becoming a professional hockey player?

No. No, he doesn’t.

When Buddha decides he’s going to do something, there’s no stopping him. It’s one of his best and worst qualities. It’s a humbling and proud moment when I hear him giving himself pep talks. “You can do this, Mitchell” he says. It’s awesome! I want him to believe anything is possible. I especially want him to believe it because I know that depression, anxiety, self medication, and suicidal thoughts are 1-5 chances higher in children with Epilepsy than other children between the ages of 5-15. I want him to know it’s hard AND believe he can get through the challenges!

I believe that if you put the energy you crave into the world it absolutely comes back. But, I also believe that how it comes back is not within our power, no matter how much I try and force it. I believe in hard work, determination, and passion. But I also believe there is a difference between following a passion through creative process and destiny. I have watched too many children grow up to not believe in destiny.

So what do I say? “Honey, you can be anything you want…except that”?

I’m constantly tweaking my position on this, but here is where I’ve landed today:

I do not tell him he can’t be a hockey player. I do not tell him he’s limited because of his condition. But, I don’t tell him he Can be a hockey player either. That might be wrong, but that’s where I am right now. I worry that if I don’t tell him he can then maybe he won’t put that energy specifically into the universe and I will be squelching his potential. I have been told that the more specific the energy the more chance you have to accomplish your dreams. But I will not lie to him. I just won’t. And for me, at this moment, the truth is he will never be a professional hockey player.

Instead I tell him anything is possible with hard work, trust and a little bit of luck. I applaud his successes and his failures. I tell him his condition is real and will help him discover his true strengths that will lead to his destiny. I tell him to listen to his body and look for the signs.

I tell him to dream big! The bigger the better! I tell him he has epilepsy but he’s good and worthy and wonderful.

I tell him the future is within his grasp but not in his control.

Maybe the person I should really be telling is me!

Life Goes on With or Without Seizures

Epilepsy Awareness Month. Day 3!
Life goes on with or without seizures.

The motto in our house is, “everyone has their sh*t”. Ok we say everyone has their challenges, but I like everyone has their sh*t better. We believe that no one gets out of life unscathed and everyone has something! But, we also believe that’s it’s a crazy beautiful, magical miracle we’re here at all and we try really hard to focus on the good, be grateful, and stay in the moment. TRY! Not always do, as there is apparently a lot of frustrated growling in my house done by yours truly, but TRY!! And somehow through it all, Buddha is the most empathic kind little soul. He amazes me every day.

Some days, the sh*t really piles on though, as it does for everyone, and we can’t just stop and reset because it gets too hard or because Buddha has epilepsy.

This morning my son-my smart clever, trouble-shooting son-swallowed a lego that got lodged in his throat.

Yes folks. It has happened to us! He swallowed a lego. He was shaky from his morning seizures and using his teeth to separate pieces (bad example mom) sent a lego dragon-claw barreling down his gullet.

He’s FINE!! He never stopped breathing completely and finally swallowed it, with no small amount of pain and gasping I might add, but at least continuously breathing.

The good news, besides obviously not choking and losing air, is that he didn’t seize during the ordeal.

We ran to the fire house, thankfully across the street, and after getting some good poundings on the back, a seat in not one but two ambulances, a totally cool x-ray picture, and an awful 2 hours in an adult ER that smelled like pee, he was ok and we were discharged…with no seizures.

Now, he had 3 last night but he made it through this morning like a the champ he is.

I guess he learned his lesson because he came home and went right back to playing with his legos. I feel like I’ve been swallowed by a dragon.

But, life goes on with or without seizures. Thank God!

Refractory Epilepsy

Epilepsy Awareness Month. Day 2!

Refractory epilepsy simply means seizures that aren’t controlled by medication, and to be diagnosed with epilepsy one has only to have two or more seizures. That’s it, any more than one and you get the prize. It doesn’t matter how the seizure presents or the cause. Just have two or more and BAM! Apparently, or at least according to the first ER doc to see our little man, “everyone gets one!” After one, however whether because of injury, genetics or otherwise, the patient is officially diagnosed with epilepsy.

For most people, one med is enough to keep them from ever having another seizure.

For my son, nothing has worked to stop his seizures. Refractory epilepsy is his official diagnosis.

There are different types of seizures. Some are caused from injury or detox. Some are caused by genetic disorders or come in combination with other conditions. And then there are those cases in which there is no earthly knowledge of cause. As is with Buddha, we are waiting for science and it’s noble doers to catch up and rescue him! God knows they’re trying!!!

Buddha has a handful of seizure types. Tonic clonic, generalized, partial, myoclonic jerks, absence, and subclinical. Everyone has the potential to seize but most people’s brains have mechanisms put in place to stop the firing from turning into seizures. To prevent misfiring when the body doesn’t have those mechanisms in place, there are hundreds of medications people can try. Although most are just variations of the same handful of drugs created to work by how body’s metabolize the chemicals. There are also no drug trials for children’s Epilepsy drugs. Kids are always growing and changing so there’s no way to set a baseline. Its all trial and error. It’s a clumsy dance in the dark where we hope to find a positive connection…that doesn’t lead to a spark.

For most people one med is enough to keep them from ever having another seizure.

Because Buddha’s epilepsy is refractory, he has to take many different kinds of meds and consistently switch to new ones as his body works around the seizure fighting components of the latest and sets his brain ablaze yet again. Finding the right combination is like winning the lottery. Let’s just say, the odds are not in our favor.

Buddha’s seizures, besides being debilitating and dangerous, cause development delays and emotional outbursts laced with anxiety and confusion. His medication causes behavioral side effects, metabolic side effects, fogginess, confusion, exhaustion, attention issues, emotional regulation issues, and more. He is also on a diet that keeps him from eating ANYTHING normal and gives him intestinal issues and acidosis if not maintained perfectly.

Even with all this vigilance, his brilliant team of doctors, the miracles of today’s modern science, of which there are many, and the constant maintenance by us and his caregivers, he still seizes almost every day.

When his body metabolizes his meds, they either make him toxic or his body burns through them in a way that renders them barely effective. We’re out of meds to try at this point, so we mess with dosages regularly.

That is the short hand version of his story.

THAT BEING SAID, he is at home and not in the hospital! So, thank God for the benefits the meds do provide, even if they can’t stop the seizures completely. He is home, he has friends, he is learning, he has fun, he ice skates and plays baseball. He smiles and he knows he’s loved. He knows he’s good! He knows that he is a good person who did nothing to deserve this.

At least I hope he knows that! After my prayers for a cure, It is my greatest wish.

Somehow, he gets up most days with a smile on his face and super powers in his back pocket. Some days are even really good and he makes it through without a hitch.
It’s not a normal life.

It’s not an easy life. It’s not as bad as it could be…as it has been in the past.

He’s alive and he’s amazing! And even though he swallows handfuls of meds every day, even though he’s often confused and his “brain is going backwards”, even when his heart breaks with overstimulated taxation or he has trouble carrying on a conversation, he never gives up. He believes he can do anything!

He still seizes almost every day.