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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.

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“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.

 

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I Love You…Me. Love Part II

I have known love, faked love, been confused by love, made love up, forced love, run from love, and controlled-well tried to control-love. I have watched love morph and seen love grow. I have watched it die. I have been hurt by love, been healed by love, discovered parts of myself through love, been stranded by love, driven to love and driven by love. I have been abandoned by love.

I have loved and been loved.

I have searched endlessly for love, for connection. And I have loved outwardly on every level in every way.

I do not love myself.

I know that my Odyssey, as cliche as it is, is the search for true love. My battles have been fought through attaching myself to outward love as a means to find inner acceptance; true, compassionate love for myself. And I have to, at least, recognize that I am a brave and valiant fighter, determined to succeed in creating love or die trying. But I do wonder if maybe I’ve been fighting the wrong battles, creating demons instead of following my heart. Have I been fighting myself as a means to love myself? Have I missed that love is grace and not earned through punishment, but granted by the miracle that we’re here at all?

Either way, I have Don Quixoted my way through life long enough. As romantic as it is, I’m tired. So, I think I may, for once, try the path of least resistance. It goes against my very being, but insanity, as they say, is repeating behavior and expecting a different result. I may be stubborn and have dabbled in crazy, but I like to think I’m not hopeless. I’d like to think I can be taught to try something new, not just try again.

I don’t know how I came up with this. It’s probably the percolation of therapy and experience, knowing I can survive rock bottom, and the stability my little family gives me even through trauma. Whatever the culminating cause, one day I tried something new and it’s helping.

I confess that in my grief and fear I can be….well, judgy. The latest example of this is the frustration, borderline rage, I feel navigating the city streets. I swear to God, people, PAY ATTENTION!! It’s not that hard. Walk on the right side of the path, keep the flow of traffic going, and don’t be an ass hole. It’s not that hard.

When I first moved to Philly I loved walking through the crowds, being a part of the flow. Now? I hate it. All I see is people being idiots!

I hate that I do this. I hate the stress it causes. I hate the energy I waste on being angry. I hate how people don’t seem to care about each other.

Of course, this is just a simple projection of my inner fear and judgment. And I hate that too. So, I had to find a way to get from point A to point B without an angry anxiety attack.

I have been playing with the idea that we are all made of the same stuff. I have begun to take away the story, the narrative, and let it lie that we are all….well, stardust, I guess. That we are simply the same. I have stripped the complicated excuses away. I have always felt myself an outlier, I have never really felt apart of the “all”.  So through my life, I created a fairy tale where I was the outsider banging on the door of existence for entry. Since this basic shift in perspective, though, this acceptance that it’s not the actions that deserve love but just the insane fact that we all ended up here at all, I began a little experiment to try and ease the angst.

As I walk down the street, I now say, in my head of course, to everyone I pass, “I love you”. I don’t mean I want them to come to dinner or even that I want to be friends. I just mean, I love you. We’re both made of the same stuff and by acknowledging that I can know love. I can love you. It is not an attachment love, but a recognition.

And guess what? It works. When I stopped putting labels on love, expectations of what I needed in return, and simply met existence with awareness, I softened. At the very least I became less hateful and angry.

For most of my life love was something I needed to fill the holes. I love love, I love being loved. I love soothing and reassurance. I love touch and acceptance. But that isn’t this love. This is a new love. A softening love. A simple, easy love.

I wasn’t loving wrong, but I was loving for the wrong reasons. There are many layers of love, many ways of connecting and I am grateful for the love I’ve known. But, I was missing the most obvious, the most simple love of all. The most basic but important kind of love. I wasn’t letting in the love that comes because we are all the same. That we’re here at all and we call came from the same source. I don’t know what that source is, but I will no longer punish myself or others because I don’t. It’s OK that I don’t know the source. Because what I do know is that if I can love strangers on the street simply because they exist, I can certainly love myself.

 

 

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Love-Part I

I love love. I mean, I really love, love. It’s everything to me, always has been. It’s the driving force behind every decision, good and bad, I have ever made. Love is powerful. Love heals. Love is a tool for growth and goodness. Love is respite and breath. Love broadens and coaxes out the best in us all. Love keeps its promises.

I believe free love is real love.

I believe love is the only thing that can save us from our collective self-destructive impulses, from ourselves.

I don’t always know what it looks like, but I know when it’s right. Love is real and right when everything works out…not usually the way I envisioned, but the way it was meant to. In the end, if I can get to the end, love is always right.

I was lucky, I came into the world knowing that love is the answer. And I was luckier still because even through heartache, bullying, and betrayal, I was encouraged to let love lead. Love was always an acceptable form of currency in my life, even if it wasn’t always evenly traded.

Since my first memories, I have committed myself to love; to absorbing, sharing, and holding, even hoarding when fear takes over, as much love as possible. From every atom in my sphere, through every second of the day, until forever, love has and always will be my answer.

What I didn’t know when I took on the mantle of love as my personal life quest, at the tiny age of impressionable and trusting, was the many forms of fear, judgment, and insecurity that masks itself as love. Love is not always discernible, but real love is always right. To me, that is what it means to be human. Finding real love is sifting through the pain to the heart.

Real love, pure and unselfish, empowers and emboldens us to be our best selves. To relish in the gift that is life, to see past the pain. It is the tradeoff of form and function, of suffering.

Love is worth it. As a child abandoned by her father, a young woman with a broken heart, and a mother with a sick child, sometimes it’s all too much to bear. But I will die, hopefully not soon, remembering the love. Love is the particles I will take with me into the next iteration of my being. I have no doubt.

Yes, I am human and I hurt…easily. And as such, love is complicated and full of expectation and foggy lenses that I will need to spend every day I am granted cleaning and refining.

But love is why I get up every day. And when I can’t get up it’s because I misconceive love, or try to control it to abate my grief and fear. Love has shown me what it means to be human. Love, through every struggle, sets me free.

How do I know love? That is a question deserving of far more attention than a simple singular post. So I am going to spend the next few weeks diving into the answers to these questions: How do I know love? What does love mean to me? What is love? How has love changed for me? And others.

To get me started, here is my answer to how do I know love?

I know love as a reflection of those I love. Their open hearts, their generosity, their kindness, their affection. I know love through a filter of experiences reflected through generations of resilience, trauma, pain, and joy.

I know love from:

A mother who was saved by the unexpected fullness of the love she felt for and by her children.

A father too afraid of himself for real love, who through lack thereof, showed me what love isn’t.

A brother who was saved by the love of his mother but can’t yet admit it so is held hostage by his resentment.

A sister who is taking New York City by the balls and making it her own because she knows the love of a good man. (That’s NOT the only reason, but it’s helping. And we all deserve the love of a good “other”)

A leader who allows himself mistakes but does not tolerate ignorance.

A boyfriend who loved me for who I was and then left me for the same reason.

A boyfriend who didn’t love me even though I pretended he did.

A dog who was batshit crazy, but insanely loyal to me until our last parting.

A friend who decided early on that she knew the love her heart needed and was smart enough to not listen to the naysayers. Me.

A stepfather, mentally ill and emotionally unwilling to face his own messes. A man who gave up fighting his selfishness and turned to manipulative control instead of love.

A director who saw more in me than I ever saw in myself and gave me the opportunity, guidance, and support to trust myself and shine as bright as my light could beam. A man who let me be exactly who I was in that moment without asking for more and then trusted me enough to hold the spotlight for him.

Three nannies who were exactly the people Buddha and I needed them at exactly the right time. Three different women who saved my life and made his so so so much better through their devotion, intelligence, objectiveness, spirit, and love.

A friend who has stood by me supported me, loved me, and accepted me for over 25 years. Through every bad boyfriend, job change, crazy family moment, and my son’s diagnosis she has been there because she is my friend.

A husband who didn’t believe in happiness, who didn’t believe himself capable or deserving of love until he held his son for the first time.

A son shattering from the inside out, who doesn’t know he may be systematically dying because the love from his parents is enough…for now.

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Anxiety, Bite Me

Today was a high anxiety day. Like eleven on a scale of one-to-ten, high. It was a nail-biting, shallow breathing, jaw clenching, “danger, danger, Will Robinson”, high anxiety day. And there wasn’t a damn thing I could do about it.

These days are fewer and farther between lately for which I am mad grateful. But the familiar panic is always hovering on the horizon of my self-awareness. Like some side mirror where things are closer than they appear, a flustered funk is usually just a periphery glance away.

On these bad days, I need a system of recovery techniques practiced and ready at my disposal if I am to make it through with any modicum of success. Just like Buddha, I have a set of tools well oiled and ready to go. These daily machinations, if you will, keep me up and moving. They decide if I leave the house and whether I can be present throughout the day. They determine whether I react with negative emotion or respond with compassionate awareness. And they decide if I end the day feeling accomplished or in a sad heap feeling like a pile of useless shit.

I breathe, I exercise, I do lemons and turtles (tricks Buddha uses where you tense and then relax your body), I call a friend, I eat some chocolate, I get out of my house, I write. Sometimes I shop. I know, not the most healthy decision, but I relent occasionally and end up with flamingo flip-flops or weird kitchen gadgets and tea towels. Not the best, but it gets me away from myself.

Lately, I have been working on deciding to make a decision that might help instead of waiting for fate to play out as I flounder in my doubt and physical pain. In my anxiety paralysis, as I like to call it. This is a pain all too real considering it comes from my head. So I try to tap into my body and help the worries settle. I use my acting exercises or my somatic experience techniques. I’m full of self-help jargon.

I don’t like to meditate in a heightened state of anxiety, which is, of course, exactly when I should meditate. But it’s too hard. It takes too much effort. I’m not very good at it, honestly. When I’m “activated” I can’t manage it and then I feel worse for my failure at being unable to help myself so I don’t even try. I’m working on building the muscle memory when I’m feeling good so I can have daily access to that tool. It’s a process. A slow one.

On the really bad days, I live in a state of fear and failure so pervasive all I can manage is to stand in the middle of my living room stranded between flight and fight. Literally, I just stand there not knowing where to go in my own house. I am frozen, wishing I was anything else but me.

There have been too many days like this. My anxiety is real. As a child, I was sensitive and reactionary, socially afraid and prone to dramatics. Now I have a label, anxiety, and I am much better for it. I am not one to shirk responsibility but it makes me feel better to know that it isn’t my fault. That I wasn’t born wrong or broken. I just have anxiety.

Although I am grateful to be able to call it out and get help from professionals, it is exacerbated by my life with a “sick kid”. So on the one hand, I am better prepared for the pitfalls but on the other, it’s an un-winnable war.

Today took me by surprise because lately, I have been rockin’ a new attitude, a soul shift, that has helped keep the anxiety monster out of my throat and gut. Not only is this great news, but it goes a step further. I am becoming aware of the moments I feel good. I am noticing and getting comfortable with feeling Ok. This is huge for me and a long time coming. I’m not doing it alone, I don’t know that I could. The amount of concentration and practice it takes to catch a subtle moment of OKness is like trying to catch a fish with no pole, no net, and no arms. But I’m starting to get the hang of it and it’s awesome. I am living again and I love it!

Just…not today. Today I have gone through and through and through my self-help steps but still can’t shake this knot of tension threatening to cut me off at the nose, or diaphragm as the case may be. Honestly, if I take one more deep breath I’m going to pass out, so today calls for the mother of all coping skills. Sitting with my anxiety. Accepting my feelings. Naming my fear and shame and allowing them room to do whatever the hell they feel like doing to me for a little while longer.

I think we’ve all heard this enough to know it’s true. At this point, it’s so ubiquitous, it’s trite, which somehow only amplifies its power. I know that to ensure a feeling doesn’t harm me, I must be able to call it out, name it, and sit with it. I must allow it space to undulate and disperse on its own time. I must see it if I am to curb it.

The caveat to this is, of course, is if we are a danger to ourselves and others and then we must call for help with a fervent hustle! We must be protected as I have to protect Buddha from not only his seizures but sometimes from himself. This is real.

I can’t give in but I can accept.

From what I’ve seen, getting to the crux of feelings goes against everything society teaches us today. It certainly goes against the way our parents were raised which can’t help but bleed into our subconscious thoughts and patterns, blindly leading behavior that negates proper emotional processing. So we run from, push down, hide, and negate any feeling we’ve learned can hurt us. Any behavior we see has put us in either emotional or physical danger. I don’t know about you, but I have a lot of these examples.

In other words, it’s way harder to sit with my feelings than it seems like it should be. I don’t want to, I forgot how or wasn’t taught, and doing so I am afraid I am weak. It all just sucks but it feels like we aren’t allowed to let it suck so it poisons us from the inside out. And until we can see it and name, it will continue to ooze its slow death.

Here’s the good news. Today I’m not great, but because of this soul shift along with surviving the last few years of hell and plenty of help, I know that this feeling won’t last forever. It may last a few hours or it may last days. It will definitely last longer than I’d like it to, but either way, it will pass. This seems like it should have been obvious to me as so far the proverbial sun has routinely come out. For whatever reason though, probably my stubborn control-freak-streak, I needed this lesson beat into me with each new stage of my life. But I’ve got it now and it’s a tool I’m grateful to have at my disposal.

So today, I will sit and observe my anxiety. I will let it be and watch to make sure it doesn’t take me down a self-destructive path. I will hate it with every breath. But I will let it be. Because I know tomorrow will be another chance to hold my child, kiss my husband, call my mom, and laugh with my sister.

Tomorrow I, hopefully, will take a free breath and start again. The sun may not come out, but it won’t go down on me either. Not today!

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To Be Found, Get Lost

No matter how much light I carry within me, there will always be times of feeling lost, being confused, seeking direction. It is the way of the human heart.
~Joyce Rupp

It’s easy to get lost. It’s easy to live each day reacting, unconscious of our patterns until we realize, too late, we’re stuck. Creating muscle memory that keeps us lost is easy. It’s easy, even normal, to assume that lost means forever less-than, forever unconnected.

I spent much of my life lost, trying to escape a maze of my own creation. Desperate to find a way out of my own defenses but unable to escape, I wandered the same paths, hit the same dead ends. I wondered why I always picked the wrong boyfriends or left jobs just when they were getting good. I would gravitate toward abusers and wonder why I was getting abused. No matter what I did, I couldn’t break the pattern. Then when Buddha got sick, my maze became alive with true deadly threats and the sky came barreling down. I was not only lost but trapped.

When we first navigate the world we are unaware we have a choice in picking a path and are instead led. Led by our parents and their unconscious mazes, an underdeveloped understanding of destiny, and an insecurity about our rightful place in the world. We are taught we are not enough. We are built to survive, to erect walls of protection rather than thrive with open confidence.

At least that’s what happened to me.

It is an ironic habit of human beings to run faster when we have lost our way.
~Dr. Rollo

My mind creates a subjective story so convincing there is nowhere else to be but lost. I begin to crave the safety of its familiarity, the consistency of it’s promised punishments, and I don’t see another way. I believe I am getting exactly what I deserve.

The greatest lesson and biggest irony of my life is that the thing I thought for sure would kill me is the thing that freed me from my maze. Buddha’s epilepsy.

My way to freedom began when I finally realized that feeling betrayed, wounded, and violated wasn’t the worst thing that could happen. That it wasn’t going to kill me, at least not yet. Watching my son’s life wane, his essence fade, his brain retreat is a pain unlike any other. I wanted to die. It was a fate worse than death, I thought.

But now I know what’s actually worse than death.

Living like you’re already dead.

That was my maze. I realized I was living like I was dead. That in some ways I had been “dead” most of my life. I was lost because as a child I was always waiting to be disappointed, then when Buddha got sick, I was waiting for death.

Every obstacle was one more thing I couldn’t handle. Every school meeting, doctors appointment, lost job, missed lunch and friend who didn’t call became another dead end. Living got too hard, the fear got too big, and the next drop was sure to be my last. Until the next one, and the next one. Even as I kept getting up, I complained about how lost I was. I was living like the dead.

I was lost but I wasn’t really trapped. Mostly, I was scared and hurt. I wanted it to all end in a timeline of my choosing.

I was (am) afraid my baby will die in his sleep. But that’s not today. Letting go of death is freedom. It’s hard earned and scary. It’s not always possible, but it is achievable none the less.

Some days are so hard I don’t know how we’ll get through them. And sometimes those days add up and bleed into each other until I am sure they will never end. But that hasn’t happened yet. Today he is here and I am here. Today is not yesterday and tomorrow is a long night off.

So, until the day I don’t get up, I’m not going to live like the dead anymore.

Not until we are lost do we begin to understand ourselves.
~Henry David Thoreau

And then I realized something else about being lost. Something I forgot. Not all paths need be paved, not all journies need a planned destination.

Since epilepsy began, and even before when my childhood maze seeded young adult choices, I forgot how much fun it can be to get lost. How freeing and fortifying it is to find your way on a path you didn’t pick. How satisfying a trip to Princess Bride romance land, or sneaking off to camp in the desert can be. The inner strength dance gave me, how powerfully healing music is or how healthy puppy memes are. We are built to survive, but also to love and connect and replenish in the sunlight of fantasy, forces outside ourselves, and mistaken roads.

When I stopped getting lost is when I began to lose my way.

I never get lost in music or story anymore. I don’t go to the movies or watch TV. (Unless Dave and I are doing research for the apocalypse and studying zombies and robots taking over the world. Probably not the healthiest use of my time.) I read books about trauma and alcoholism and epilepsy. I never catch live bands, I critique theatre and am startled by any sudden jump in noise or movement. Everything irritates me because I don’t allow myself to be lost. I surrendered that space in my soul because I thought that’s what it meant to be a good mom. And because I thought if I opened myself up to that freedom I would lose my little boy.

But he’s here and all I’ve lost is the capacity for fantasy, for dreams.

As a young woman, I was not afraid to be lost. I figured I’d find my way eventually, that life was meant for dreaming. But then experience let me down one too many times and my maze grew too tricky, my patterns became unbreakable and my life settled into ultimate unworthiness. As if the journey had already ended.

I mistakenly thought dreams were the problem. That I had to face facts and accept my life. Well, that’s true, I did have to learn to do that. But I was wrong that it was a trade. I never needed to trade fantasy for reality. I just needed to live in its duality. I can’t believe how long it’s taken me to figure that out. I can’t believe how hard it is to do.

But as of today, I have survived reality so far. I’ve survived some pretty hard shit, so I must not be that unworthy. I’m still standing. I keep finding new ways to heal, new ways to love. I keep getting stripped to the core but rebuilding. I’m a mismatched transformer at this point, but I’m even getting to be OK with that.

I do have to keep my wits. My son needs me to be on the ball and keep the pieces moving so he gets the best possible chance at life. I can’t just take off for the desert or run from my reality. My body breaking down and I can’t dance with the same physical abandonment. I have lost pieces of myself along the way, but that doesn’t mean I’m done for. It doesn’t mean I’m not allowed to dream.

At this point, I am uncomfortable with letting go. I don’t know how to anymore. It feels awkward and the muscle memory is forgotten. It’s all conscious and a lot of effor. It’s hard. So, I’m going to rebuild that too. Happiness is a muscle like any other. So, bring on movies and the music and “let me dance for you”.

I will no longer be afraid to dream, to feel fanciful…if in very small doses at first. I will commit to giving myself as fulfilling a quality of life as I have committed to Buddha’s. I will live like there will be a tomorrow.

I will get lost and learn to live again.

I got lost but look what I found.
~Irving Berlin

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Waiting in the Wings

Last month Buddha performed in his first school play and, not surprisingly, it stressed me out from casting to curtain call.

He loved it! He was wonderful!

I’d like to let that be enough, to leave it there. But I can’t. I won’t.

If I don’t do everything I can, at every opportunity, to improve my son’s chances of creating a place for himself in this world I will have failed. I will not have done enough.

Fact.

This isn’t about letting him find his own path, or trusting that every stepping stone is a learning experience to empowerment and self-ownership. This isn’t about allowing hard lessons to build strength of character. This isn’t about my anxiety or control issues. I am well aware of the damage and negative narrative they both inflict on me daily.

This isn’t about the show, either. It’s about the process.

It’s about children and their right to experiences that nurture healthy development.

But it’s mostly about my son’s special needs. His extra, different needs. When it comes to how he internalizes his experiences, sometimes good enough just isn’t. Shame has damaged enough generations and I can’t sit by and let it claim my little boy without a fight. He is already struggling with emotional governance. He’s 8 and has a neurological disorder. It’s all so real.

I’m afraid of what will happen if I let it lie. I’m afraid he’ll spend his life waiting in the wings. Or worse.

This was the first show Buddha was in I didn’t direct. At nine months he premiered as the “happy ending” baby in my theatre school’s production of Into the Woods and was a huge hit. (I might be a little biased.) He was on stage every year after…until epilepsy. At 4, he was the cutest Kristoff from Frozen you have ever seen. After that, after diagnosis, he was afraid and didn’t try again until this year. This was his comeback.

I have run theatre schools for over 25 years and, I admit, I have some established ideals and heady expectations for working with children. I have binders full of curriculum, boxes full of scripts, and Pinterest boards up the wazoo for child development, parenting, progressive learning, science-backed education, and more. I’m an all or nothing kind of girl. I also have a clear, defined philosophy on why and how theater is important for children. This expertise came hard earned and backed with success.

But this was Buddha’s thing, not mine, and it made him happy! So, I gladly gave over the reins. (Gladly might be an exaggeration.) Plus, God knows teaching your own kids always sounds like a good idea until you’re halfway through and you can’t turn back and suddenly your living in a dark Modern Family episode without the touching, resolved ending. So, I trusted the processes and took on the supporting role of fan mom.

He got a little part and was so proud of himself. It was an especially big deal because of the anxiety he’s battling this year. Another gift from epilepsy and his parents DNA. He practiced, he listened, he cared. He even let me help him. That’s how much this meant to him! At one point when I was asking him to repeat one of his solo lines a few times more than he wanted to, he said, “You sound mad. Are you mad?” Damn, son!

“No! honey, I’m not mad.” I said. “This is mommy in work mode! That’s all. You’re working your hardest and doing a great job! And I know you can do it. We’re working the steps so YOU know you can to it too. This is just mommy teaching,” I said. And, can you believe he said “OK,” and went back to work? OMG. If that had been me, I’d have screamed at my mom about being mean and left the room crying. I spent much of my childhood in that exact scenario.

He was doing all the things we’d been working on with therapists and teachers during the year. Using his words and enlisting his own opinions, confident in his self-expression. We were working, communicating at a level I didn’t know him capable of and it was awesome!

I’d like to let that be enough, to leave it there.

He loved the idea of being in a show, the pretending, the posturing, the accolades, the storytelling. But what he really loved was being part of the group. What he really loved was feeling valuable, like he had a place in his class. A class he barely attended all year because of med and seizure complications.

I wish I could have let that be enough. I wish I could have left it there.

Here’s why I can’t. We practiced his lines and made sure he was ready for his big debut. We were, however, unclear and uninformed of exactly what the kids did throughout the rest of the show. Buddha couldn’t remember, or didn’t know, or couldn’t explain, or a collection of all three, what he did as an ensemble member. Being ensemble is a difficult set of sequencing for any kid, let alone one with limited working memory and underdeveloped executive function.

I asked for videos of practice, and none were sent home. I asked for counsel on the parts he was struggling with, and got a “let’s see how he does response”. I asked to watch dress rehearsal and was invited to “wait in the lobby”. I was never told of any confusion he was experiencing.

It was a risk, not pushing harder, I know. Not stomping my feet and demanding more attention left my tongue bleeding on more than one occasion.

I was riding the line between experimenting with what Buddha could handle and going full mama bear on the director. A director who, by the way, was never told about Buddha’s epilepsy. But that’s an issue for another day.

I’m actually a bit of a chicken shit in real life, but if someone is messing with my kid? Let’s just say, Captain Hook would look meek comparatively by the time I got done with them.

But, this was Buddha’s thing, and he was happy. I didn’t want to mess that up. I didn’t know what would happen, it was a new experience. I took a chance. I didn’t want to seem like the snotty, know-it-all director who comes in touting how she has much better ways to teach theatre to children. This was a grey line for me. Experience, performance, education, special needs, independence, parenting. I had to compartmentalize them all to ensure I was being what Buddha needed not typical bombastic me.

So, I let it be enough. I left it there.

The night of the show the opening numbers went pretty well. He followed his neighbors for the dance moves but pulled them off and got where he needed to be. In the front row! He looked happy and engaged. Then he almost fell off the stage but caught himself. Then he got tangled in the curtain during a scene change and missed a line, but no one was the wiser. All good.

Then, and best of all, he remembered his lines and his little duet. Center stage he relished the moment and I could feel his little soul fill up! It was a huge moment for him. So much bigger than his three little lines.

But then the next part of the show happened and we went from Never Land to Walking Dead in an instant. He got lost. Totally lost. He practically got eaten. He was shoved and shuffled about by the other kids until he landed in a no-mans land between two happy lines of singing and dancing pirate wanna be’s. Two lines of cute, dirty-faced, lost boys and girls smiling their totally “normal” smiles. This went on and time slowed to almost a stop as my little lost boy literally turned in circles not knowing where to stand, what to do, or who to turn to for help. He wandered back and forth, and back and forth until he just stopped and looked out at the audience, resigned. His eyes glazed over and this absent, confused look came over his face. Raw fear. Raw pain.

And the show went on. Without him. While he took on the role of the “sick kid”.

All he needed was a buddy. A partner. They could have been the “Lost Boy” twins. That’s all that needed to happen for my son to not have felt that shame.

Life lesson or opportunity for healthy development? I don’t give a shit. No one puts Baby in a corner, and no one lets my kid get eaten.

Except that’s what happened and I couldn’t do a damn thing about it.

It was just left there for the world to see.

Fail. Fact.

This show is a small reflection of a very big world! A world we don’t get a break from. And it was personal for me. Was I wrong to not be more demanding? Was it meant to be? He’s my baby and I know he’s going to have hard knocks, but do we really need to set them up for him?

The next day he had another show and now I knew how to help him. He made it out of the curtain for the missed line and he didn’t fall off the stage. He remembered where to stand, and was assertive enough to get where he needed to be. He still didn’t know the song, but he wasn’t lost.

He is capable, but he needs a different setup. He needs clearer expectations and a little bit of help.

Don’t we all…to some degree?

I am aware that I try to plan for, if not flat out control, every possible hurt that comes his way. Healthy development is essential for my kid because I am afraid, with good reason, not only for his mental health but his life. I am charged to defend his right to a good, loving life. I would feel like that whatever his diagnostic destiny. I felt like that for every student I ever taught.

But this? This is my son. And he shouldn’t have to wait in the wings, or get eaten by zombies, or fear Captain Hook to become the person he has every right to be.

I couldn’t let this one be but I can’t change it either.

I have to leave it here.

I’ll do better next time.

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I am a Lost and Found Mom….Again

I, obviously, have not been consistent with this blog, and for two years I have been trying to figure out why. I have been hiding, surviving, trying, albeit half-assing, my way through our life since Buddha’s diagnosis in a way I would hate myself for if I had the strength to crawl out from under my anxiety and fear. If I could let go of my grief.

Why is this page still here? I don’t have the guts to shut it down. I also don’t have the guts, and maybe the words, to follow though and put myself untethered on the block, and I am ashamed of my constant inconsistencies. It’s funny because I am equally one hot-headed, determined show off who, despite any unintended intonation, has a lost to say about all the ways I desperately want to fix the world! I want to fix it all. I want everyone, myself included, maybe especially, to know they are worthy of a life of grace and gratitude. Joy and love. Safety and stability. Possibility. I’m guessing that over the last two years I didn’t actually think that was possible with a “sick” kid. My bad. Not sure what I can do about it, but, my bad. I may also want a world without pain, but I don’t really, it’s just that I need a little break from mine. I want the world to have what I didn’t have as a child, what I don’t have now, and what I am afraid I am not worthy of ever having. I want to heal the world. Yes, partly so I can be worthy of healing but don’t dismiss that need in place of the genuine impulse. I want to heal the world. The universal pain is many times too much for me to bear. I am an idealist in the wrong time and place.

I want to keep my ideals in a grown up world. I want my child’s fate, this pain, this battle with no end to have a meaning that makes me better, that makes him strong and keeps him alive. I want our shit to propel him to live a life he could have had before his diagnosis and, damn it, deserves still, not curse it for our remaining days. I want more than just, well, it was meant to be! I want to fix it all.

I am not found. I am not entirely aware of the ways in which I am lost. It’s ironic, if not ridiculous, that I am also an extreme over-achiever. I think I have been trapped between perfection and failure for most of my life. It’s just that life kicked my ass one too many times in the past three years and I am now paralyzed between who I wanted to be, who I could be, and who I am. My expectations are something, and usually not anything helpful!

I have thought that I don’t keep it going because I want the blog to be Dave’s thing. My husband is the true writer and it opens his heart in a way I can’t reach. He deserves that connection to himself and our community.  Our son deserves his reflections, his words of unhindered love. I worry I’m preachy or whiny, or that my shit isn’t worthy of words. I’m worried I don’t have the resilience or stamina to keep it going. But honestly, it just scares me. It wasn’t just the epilepsy diagnosis, it wasn’t watching my son almost die, his body shut down and his brain fire into a damaged zone. It isn’t just the inertia of working day and night to rebuild our life and our expectations while simultaneously waiting to wake up one day and our child be gone. It isn’t just that I live in a state of constant crisis, sometimes of my own making. These were patterns a lifetime in the making. I have been lost for a long time. Abandoned, manipulated, and shamed as child by one parent, loved and enmeshed with the other. Addiction, fear, anxiety, constant illness and uncertainty have have laid a crisscross of opposing beliefs in my heart to make me the wanderer I am. Not unique to the world but damaging to me.

 

I want to be found, but I need to know what that means to me. I also want it to be OK that I am lost. I want to earn and feel worthy of sharing those thoughts, that process, and, hopefully some progress. Maybe a little grace. I will continue to work the definition of lost and found for me as an essence, a presence within my circumstances. I will try to be brave and share them.

I’m happy to say that in searching for why I haven’t been writing I have found something. I have landed on a meaning of lost and found for me and Buddha. It’s rough waters we surf between disease and health, disabled and normal, but it’s in that place I think a part of me might be found. It’s not the place I want to be found, but I guess that’s not up to me and it’s a good place to begin again. This is where I will stop pussing footing around and give this journey meaning. He is sick, he might die, he is sometimes not the same kid from one day to the next. He’s only 8. But he is also alive and wonderful and kind and capable. We have a whole two years of Instagram goodness to show for our efforts and we are not done yet. The world may not know what to do with us, it may not have a place predesigned for our belonging, and it may be scared of what we’re bringing. That in-between place makes us feel lost, but that doesn’t mean we can’t find ourselves again, and again, and again. We can be found, even if I never stop being pissed and hurt that we don’t fit in.

I promise to define, search and wander that place in my mind, in my heart, in my life, and in this blog! We may live with one foot in and one foot out of the door, but that doesn’t mean I have to be lost.

So, here I go. Lost and Found…between sick and well, disabled and typical, expected and created!

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Semantics

Epilepsy Awareness Month. Day 9!

Semantics

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.

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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!