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

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.


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.

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!

Lost Boy-LTT

Dear Teacher,

I’m so happy the play was a positive for experience for Buddha, he loved it! I, however, am upset about much of the process and hoping that by sharing my concerns we can avoid a situation like this in the future. How Buddha internalizes the events of his life and the people in authority around him will be a major component to how his confidence develops,  and while I am trying desperately to teach him accountability, assertiveness, and trust, it’s harder to do that when he isn’t being given what he needs by the people who are supposed to be showing him the way.

I know this play was a bit stressful for you too and I totally understand it’s a new venture without a yet honed plan. I know we’re all figuring it out as we go. And I know that you see my kid for his strengths and his challenges. But, can you please make sure people who are dealing with him, especially those teaching him, know he has a medical condition and requires legit accommodations? I guess since he has a 504 and a one-to-one, I assumed that would be done and I admit I’m distressed that it wasn’t. I’m thrilled he was treated as one of the other kids, but the director had no idea of his challenges until I called him half way though the process to see how I could help at home, and he said, “Yeah, I can tell there’s something going on. What’s wrong?” Please understand the effect this had on me? I know you know how this attitude about and toward Buddha is exactly the opposite of what he needs, so I just want to make sure it doesn’t happen again. I know not everyone is going to be the best, I know he needs to learn to handle hard and unfair situations, but this is second grade and it was the best part of his week! It wasn’t just a play it was an opportunity to build trust, to work a process, to socialize, to memorize, to be a real part of a community, to connect to his peers. This was a huge deal!

His accommodations not being taken seriously was upsetting in itself, but the real reason I’m writing it because of the night of the show. It was a second grade play, not a method acting lesson on how to be a real lost boy. Unfortunately, he knows that feeling all too well. As the performance was getting closer, I also wrote to the director and asked what I could do to ensure he didn’t let the class down after missing weeks because he was in the hospital and we were on spring break, and I was dismissed with a one sentence email, “we’ll see how he does.”. Then, I asked if I could watch dress rehearsal and was told I could “stay in the lobby”.

Then, exactly what I was afraid would happen, did. The night of the show Buddha didn’t know where to go during one of the songs and wandered around the stage totally lost and scared, while everyone else was singing a happy song in two cute lines. The look on his face was so clear, frightened, and lost! And the whole room was seeing it! It wasn’t a mistake he made, it was the process not accommodating his working memory and processing deficiencies. He was clearly capable, evidenced by his performance in the parts of the show we practiced at home, he is not an idiot! But, you know he is unique. Literally, someone could have given him a buddy and that look, that fear needn’t have ever happened. I put on shows. I have done this my whole life and I know things happen! I don’t expect him to not get lost, and I know other kids get lost too, but not like that!

I know this was a complicated experience for you too, but this was too important to let go. I just really want to ensure that people who deal with Buddha are aware of how capable he is while also being aware and careful because that he has very real needs. Needs that if not met, could dramatically hinder his chances of emotional and practical success in the world. This isn’t just about allowing him to be successful, it’s about building a foundation of competence and support so that he doesn’t spiral into self doubt, depression or worse, which you know is a very real possible path for him.

I’m grateful it was a positive learning opportunity for Buddha to work on being assertive and learn the value of practice! He loved being on that stage with his friends. He wants more of that so desperately…and it devastates me.

Thought you should know:(


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.