Tag: parenting

Posted on

The Doctor’s Visit. A Scene From My Life

*This script is based on real-life events from the year 2018

Int. Neurologist Office – Day

Morning Appointment with Kerri, Dave, and Mitchell to discuss Mitchell’s seizures and increased behavior/emotional outbursts. The office is new and brightly lit. It is clean with a mural of a child in a tiger costume playing in the grass covering the wall above the chairs for parents. The energy is quiet and tense. Kerri and Dave sit in chairs facing the door, waiting for the doctor. Kerri is lost in space picking her lips, and Dave is on his phone. Mitchell sits on the checkup table slumped against the wall with his IPad.

The Doctor enters. Kerri stands to hug her. Dave looks up and smiles. Mitchell barely says hello.

Cut to the end of the appointment. Close up on Kerri and Doctor who are standing close together by the door. Dave is in shadow behind Kerri. We do not see Mitchell. Kerri is upset, frustrated, and scared. The appointment has provided no answers to Mitchell’s worsening condition. We see Kerri’s shoulders slump and her body droop. Kerri has just, once again, told the doctor that Mitchell can’t even get out the door without a meltdown, that he’s not living a “real” life and she doesn’t know what to do, that she is “losing” it.

DOCTOR

Kerri, you should not be getting him ready for the day, you shouldn’t even be getting him dressed.

KERRI

What do you mean? I’m his mom. That’s literally my job.

DOCTOR

Yes, you’re his mom. But right now your job should only be to love him. You should not be helping him with homework, and you should definitely not be the disciplinarian,

KERRI

(Dead Silent, then stuttering, then shaking, suddenly silent again with tears beginning to escape down her cheeks.)

I don’t even know what that means? That’s not real life. Dave has to work, or we have no health insurance. I’m it, and I’m supposed to be able to do this. How is he going to live a “real” life? He can’t function, He’s coming apart at the seems. And it’s tearing him apart too. It’s my job to make sure he’s OK! He can’t live like this, what’s going to happen to him?! We can’t live like this? How do I do this?

DOCTOR

Take care of yourself so you can be what he needs you to be right now. Just love him. And maybe right now, you’re asking too much of him and yourself. It’s not your job to save him.

KERRI

That’s exactly my job. I’m his mother! He hates me. He’s sad all the time. And these…episodes?! He has to learn that it’s not OK to be mean and violent, no matter what he’s feeling. But he can’t control it, and no one knows what’s causing it. Is this just him now? He hates me, and we’re both at each other all the time.

(Breaking for a second)

I have to help him. I want him to love me again. He gets further away from me every day. I want my little boy back!

DOCTOR

I know. But you can only take so much, Kerri.

KERRI

What if this gets worse? What if he grows up and hurts himself? I have to prevent that! (closed mouthed suppressed sobbing) If he’s not OK, then what the hell do I matter? I can’t take care of myself until I take care of him. That’s what I supposed to do, take care of him! (voice rises in desperation) He still needs to be a kid; He has no life. But he needs to go to school! If he falls too far behind, he’ll never catch up. And this behavior! (throws hands up in frustration and panic.)

DOCTOR

(With tremendous kindness but also firm. )

Kerri, this is happening. You have a very sick child, and all we can do right now is go through the process.

(puts hands up in a sign of making peace)

I know we’ve been through this before, but we have to keep trying. Daily life routines will help, but you shouldn’t be the one to put them in place, Kerri, he can only do what he can do right now, and so can you. It’s too much, and if you fall apart the whole ship goes down!

KERRI

(Hopeless and angry. Feeling faint and weak, but at the same time feels like shoving the doctor. Speaks in a low raw whisper.)

It’s my job to teach him to become a functioning person! I can’t work, I don’t have a life. This is the only thing I’m supposed to be doing, and I’m failing!! I’m failing my little boy. He’s so sick!

(fully sobbing)

It shouldn’t be that hard to get through the day. I’m his mother!

DOCTOR

So be his mom and love him. Take care of yourself so you can be there for him through this. We don’t know how, but it will change. Nothing stays the same forever. Get someone to help you! You can’t be head of the house and be his mom right now. They aren’t the same job. Be his mom and love him. Let someone else be his caretaker and help take care of you too.

KERRI

(Silent. Head Down. Crying. Defeated)

END SCENE:

Except, it wasn’t a scene. It was real.

I don’t remember leaving that appointment. I don’t’ remember what tests or referrals we got or what else we discussed. I don’t know what Mitchell was wearing or where he was when his doctor and I had this conversation. I know Dave was there, but I don’t remember that either.

I do remember my mom was in town because it was Thanksgiving weekend. I do remember thinking about how much I wanted a regular holiday weekend like a regular family and feeling resentful that one of my favorite holidays was being ruined by epilepsy and my inability to cope. I remember feeling frenzied trying so hard to force the festivities, and exhausted from the futility of it all. I remember Mitchell having his bazillionth “wonky place” episode as we were getting ready to go the Thanksgiving Day Parade. He was hitting me and yelling and telling me he wanted a new mother, among other horrible things. Buddha was not himself; hadn’t been for months. I remember wondering if the Mitchell we knew and loved might be gone for good this time; if he could ever come back. Between the meds and the seizures and everything else, there was never an answer. It’s always just trial and error, and I remember wanting to scream at the sky, or anyone for that matter, just to give me an answer. One way or another, I needed an answer. The fear was killing me. The pain was too much.

I remember thinking, This is it, this is our life now. It had already been months of this, just me and Buddha going round and round between seizures and fights, and tears. I remember sitting down in his little blue beanbag chair under the grey loft bed we had no business buying him, totally defeated. I remember the physical feeling of not being able to get up from that chair for hours. I remember crying and feeling empty and stuck. I remember the family leaving for the parade and then coming back and me still in the same beanbag chair feeling as if no time at all had passed. I remember my mom saying that if I didn’t get someone to help me with Mitchell, she would see about getting me into a hospital.

I remember breaking.

And then, I remember thinking I would die before I would let anyone take me from my son. The thing is, I wasn’t sure I could do it. I wasn’t sure I could be what he needed me to be. I wasn’t sure I was strong enough to be his mom.

But thank God, I wasn’t alone even if that’s how I felt.

A few weeks later, I remember Dave found Alex and I agreed to see yet another therapist.

That was the day; things began to change again. But this time towards self-care and healing instead of defeat.

Alex came in to get him ready, keep him fed, and do my dishes. She helped him with homework and created a routine and point system for every action of his day, including a cooldown system for his wonky place episodes. She was the one who encouraged him to name the episodes, and that’s what he liked “wonky place.” Before then, it was just terror and aggression. We didn’t know what to call them.

I remember crying alone in my room…alot…for weeks, as Alex got him to do things I never could.

I remember Mitchell’s breaking point in February when we finally had him admitted because of his erratic, aggressive behaviors. We were at Lucky Strike, and he didn’t want to leave. After screaming in front of everyone, running away and almost out into the street, it took two of us 20 minutes of holding him down to get him into the cab and to the ER. We were finally admitted, and they were beginning to talk about some pretty severe measures. I remember being so deeply scared. I remember him crying. He was sad, and sorry and angry and so so very lost.

I remember feeling a little bit more able to handle the situation.

That’s when we pulled him off the latest med even though his seizure control was the best it had ever been. I remember deciding to give him a better quality of life over his improved physical health. I remember the weight of that decision but knowing it was the lesser of two evils and what we had to do. I remember the seizures ramping up full force all over again.

I remember being better able to handle the situation. I remember slowly letting Alex bare the brunt of the bad times so I could finally be the good guy.

I remember trying so hard, through so much pain, to accept the help I needed so that I could be the mom Buddha deserved. I remember all of a sudden having time and emotional space to concentrate on working through my fears and control issues.

I remember realizing how much of a toll this was taking on my husband and that he needed me too. My poor husband was a shell of himself at that point. He had a new job and needed to focus on that, and he was trying to be there for me. I realized we both had to be well to be there for each other. And so I let go a little more while Alex worked on Mitchell and my therapist helped me begin to process the trauma and grief. I was starting to accept compassion from my friends. I began to take care of me. And slowly, I began to like the way it felt to take care of me. I wasn’t feeling as guilty for what I couldn’t do, but grateful for what I could. I once again began to feel grateful to be Mitchell’s mom instead of fearful that I was the last thing he needed.

Then, all of a sudden, it was summer, and I remember feeling a little relief. I was relishing the happy, and I was feeling gratitude and love. I remember so many fun days from that summer. Fun days that were still interrupted with wonky place times, but were manageable. Or rather, I remember feeling like they were more manageable because I was stronger in myself. I remember the first time I didn’t have a big emotional reaction to one of his episodes and could walk through the steps with him calmly. I remember Alex standing up for me. I remember getting a little more sleep. I remember the warmth of the sun on my face and more peace in my heart. I began to feel proud of myself as a mom.

We got to be OK with defining a new normal, and I had more and more strength to be what Mitchell needed me to be. I wasn’t just recovering from my break, but I was building myself up stronger than before, more confident than before.

I remember beginning to get more snuggles and focusing on the love and connection rather than the daily charts and behavior control. I remember thinking how hard this was but how blessed I was (and am) to have this amazing, brave, loving boy, and to be his mother.

I remember Mitchell being happy and feeling proud too. And what a boost that was!!

I remember starting to work out again, and I remember the day I woke up and didn’t dread what the day might bring. I remember the day Alex and I started Lost and Found Moms and my amazement that I could not only be Mitchell’s mom but work again too. I remember Dave and I started going on date nights. We even spent the night away without Mitchell, over a year later, of course, but we did. It was the first time since before Mitchell was diagnosed that we had done that. And I remember sleeping like I hadn’t in years…and not feeling scared or guilty.

I remember starting to forgive myself for not being able to save my son. And I remember Mitchell being able to look at me with brighter eyes and telling me he loved me.

It was a very long year, but I made it through stronger than ever, and Mitchell did too. I remember feeling like I wasn’t failing at being his mom. It felt like I was beginning to let go of some of the control I needed to have all the time, the control I thought I needed to have to save my son, and I remember feeling more able to go through the changes of this crazy life with more acceptance and gratitude.

I remember telling Mitchell, “Buddha, I love you more than anything,” and him saying it back!

END

*This was, of course, not the end, but a moment in time. The moral of this play for me is to remember that accepting help is not a weakness, but a sign of strength. That I am more able to be the person, the parent, I want to be when I accept what I can and can not do. And that I am the mom Mitchell needs me to be, because I will never give up on him…or me.

 

Posted on

The Dark Truth

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

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

Or do I?

I think I might be a liar.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-Dr. Nick Baylis

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

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

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

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

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

Posted on

Mind the Gap

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Posted on

Expectations-Kerri’s Take

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

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

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

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

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

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

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

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

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

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

It’s a total win-win.

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

Posted on

Tone.

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

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

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

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

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

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

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

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

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

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

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

My tone can not be missed.

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

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

For me, it always goes back to tone.

 

Posted on

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.

Posted on

“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.

 

Posted on

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

Posted on

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!